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» LymeNet Flash » Questions and Discussion » Medical Questions » I thought my brain lesions were new! I have had them 10 yrs!

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Author Topic: I thought my brain lesions were new! I have had them 10 yrs!
lymebytes
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I honestly can't believe this. I just had an MRI last week, it showed lesions, I have been so upset.

I had a brain MRI in '99 when migraines and vertigo started, I was told by the neurologist the test results were normal.

Today I asked for a copy of the MRI report from '99 - and I nearly fainted! It reads I had lesions then!! But that duck told me everything was normal!

I guess this proves I have had Lyme at least 10 years almost!?!?!

I didn't have pain back then, only bouts of vertigo and migraines.

Had I only known the results, I would have studied the possibilities, maybe I would have had Lyme treatment then and be better by now.

This floored me...I mean, a doctor telling you all is well...get copies of your reports!

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Lymetoo
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I know! Ducks are so dumb! They ignore stuff that says POSITIVE, etc!

I do my best to obtain copies of all lab/imaging reports.

It is really a shame that you didn't know about this MRI .. but do you think you would have considered Lyme as a possibility back then?

sheesh!

--------------------
--Lymetutu--
Opinions, not medical advice!

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CD57
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Hi Dana,
This IS truly inexcusable. However, brain lesions DON'T mean that you won't get well! Lots of people have had them go away with treatment. The brain is amazing that way.

Have you had a SPECT scan?

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barbarame
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If there was not a increase, that is a good thing.


barb

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cactus
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I have brain lesions, too. Mine were found in 2001, and I didn't get diagnosed with Lyme and co till 2005. They misdiagnosed me with MS.

It's so upsetting when we look back at what could have been, and the clues that were there all along, if only our ducks had put the puzzle pieces together.

At least you can now compare to see if they have changed at all.

And you know you are on the right track now. I've seen dramatic improvement since starting treatment, and I hope you do, too.

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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Hoosiers51
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To be fair--- Yes, there is a strong trend among Lymies of having lesions. Therefore, you could say Lyme and lesions are correlated more strongly than lesions would be correlated with the general population.

HOWEVER, I have also heard that we don't really know how many people in the general population have lesions. Obviously because healthy people don't get scans done. You could hypothesize a lot of these people have Lyme or some other disease, but the truth is there isn't enough data to know if they are just there (some people have cellulite, some don't....it can indicated some health problems, but doesn't always) or to know if it's just "the way some people are."

That is to be fair. That is probably why your doctor didn't say anything about it. No one WANTS to KNOW they have lesions, BUT, we don't know how many people do! We may never.

It is obviously something to be "concerned" about, but I'm just saying that may be the reason. It would have been nice if he would have told you they are there!!!!! But no one really has enough data to draw conclusions about the general population from it....I'm guessing at that point you weren't a Lyme patient.

So sorry you're dealing with this, but maybe what I said helped provide an explanation to what was going on, though I'm not saying it's right or wrong.

Hang in there! I try not to worry about my scans too much.....in essence it doesn't affect our treatment or predict anything about our treatment or outlook, it is more just shocking. So sorry [Frown]

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METALLlC BLUE
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Read this, I posted it in the "Most Outrageous thing a doctor has said" thread.

This isn't about an MRI, nor even about lesions directly, but it'll still click when you read it.

quote:

Mine is hilarious:

I had 6 Brain SPECT scans done. Every single one was abnormal. In 2004, my Brain SPECT scan said:


"Cerebral Cortical perfusion ranging from 50% to 70% of max perfusion seen in RT frontal, temporal region, left frontal and parietal regions.

Heterogeneous cerebral cortical perfusion suggesting widespread process such as a micro vascular, infectious, or encephalopathic process rather than large vessel or classic degenerative dementing process."

I was hospitalized in early 2005. I had all my medical records with me. The Infectious Disease specialist came in, and told me "You don't have Lyme Disease."

I said "Dr. _____________ said that I do, and it's supported by 1 psychologist, 1 psychiatrist, 1 infectious disease specialist.

He said "We tested you, it was negative." I said "Testing for borrelia is inadequate, I'm well aware of this fact, and you should be too given the abundant studies available on the public medical database -- Seronegative ELISA and Western Blots."

He said, well that may be, but you don't have Lyme.

I said, well I was bitten by a tick at age 9, I've been sick since, that was 1987. I have a history compatible with the disease, I'm responding to treatment, I have bands showing up on the test, although circumstantial evidence, and I have 6 brain SPECT scans indicating global hypoperfusion and vasculitis."

He says "Let me see them, I'm going to consult the Neurologist overseeing your case."

I show him and the Neurologist and he reads the scan results, which I posted at the beginning, and you know what he said?

"This test isn't yours. Dr. S and I agree. You wouldn't be able to talk to us if this test were yours; this is the test of a 90 year old man with severe Dementia, neither of which you are. It's a lab error if it is in-fact yours."

So I say, well I have 6 of them, done at more than one facility. Farmington UCONN, UMASS Memorial, Western Baystate." Are you telling me they're all incompetent or that their equipment is all faulty?

He said "Well I don't know, but these obviously aren't your tests, someone gave you the wrong charts."


He then said "I know your Lyme Disease specialist, him and I worked together for many years -- over 25 years in-fact we've known each other. He's incompetent and a quack. He likes to take a lot of vacations out on his Yhat on weekends. That's what he's doing with your money."

I don't pay him. Medicare does. Medicare has investigated him and found him competent in treating me, and I reviewed his malpractice history. He hasn't had one malpractice suit, nor been brought before any medical board at any point, so I think the burden of proof belongs to you. Additionally, He works 6 days a week, has over 10,000 patients, and he doesn't own a yacht, and It's not very professional to talk about a fellow doctor as you have. I'd recommend that if you two have disagreements, that you two work it out, it's not my problem.

He tried to talk over me, but my family was there and they told him it was time for him to leave. He walked out and he was ****ed. What a ****in' moron.



--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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adamm
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I don't believe for a second that such a person as the doc in this

story doesn't know what's going on; the one's like this

are simply told that, if they want to keep their jobs, they won't

diagnose Lyme.

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METALLlC BLUE
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There absolutely is something wrong with this picture when someone tries to argue with me like that. You should have seen this guy, it was unreal.

My family couldn't believe what they were hearing. It was surreal. He got his *** handed to him verbally though, but it got nothing accomplished. It didn't "help" me, but it also didn't allow him to possibly hurt me with some other form of treatment.

Very sad, truly.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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Hoosiers51
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Just to clarify on my above post....I am by no means downplaying lesions, i was just trying to speculate as to why you weren't told about them by your doctor. [Frown]

I just truly believe we know how sick we are, and all that really matters is observing our symptoms. It would be nice if eventually these scans could be used to make a diagnosis of Lyme, but I doubt that will happen anytime soon, because this sort of data seems hard to collect before anyone could use it to make sense of anything. This whole brain scan thing is just an uphill battle.

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lymebytes
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I will try to cover everyone..

Lymetoo..had I known about the lesions in '99 - it probably would have convinced me I had Ms since I knew NOTHING about lyme...so I guess in that regard, good thing I didn't know. I might have come across Lyme as a possibility, but I don't think I would have lingered there. These stupid doctor's - had he had an ounce of LD knowledge, he could have suggested the scan could mean that, but of course that is a dream.

CD57- No spect scan. This MRI was a new machine, and I didn't even use contrast and it shows my vascular blood flow through arteries to be normal - amazing! No more tests! [bonk] (I will get to your p/m soon..I haven't been on the computer much the last 2 days...HURTING SO BAD! Horrible time right, just trying to relax a little)

Metallic Blue - Unreal, unreal! My LLMD told me that doctors are never trained to say, "I am sorry I don't know what is wrong" that is a huge no-no..so they have to come up with something, usually wrong, apparently! Geez, unreal. The remark about how your LLMD spent HIS money makes me wish I could slap that doctor. I would have said, "At least he is earning his money and actually helping people! How do you spend your well unearned money misdiagnosing people all day, moron?"

Barbarame - I am trying to find out if there is any significant changes from my '99 MRI to now...so far it is a possibility...but I am actually waiting to hear what the radiologist has to say. They are worded slightly different, but both indicate lesions.

Hoosiers51 - lesions on the brain are more common than I knew. I read quite a bit about them yesterday, migraine sufferer's most likely have them (I have migraines) and even people develop them as we age. You are right..it doesn't mean a whole lot really, it was scary when I learned just yesterday I had lesions, but utterly ridiculous to learn I have lived with them 10 years and didn't know it - [Roll Eyes]

Cactus - did you do MS treatments with corticosteroids? I know a few other's misdiagnosed with Ms for many years who treated with immunosuppressants and are trying hard to get well now knowing they have LD.

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www.truthaboutlymedisease.com

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barbarame
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did you get the actually MRI cd rom?

I asked the technician for it. I was able to put it into the computer and look at it myself.

barb

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cactus
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Lymebytes, I didn't go the corticosteroid route, but went more natural. Thankfully!

I can't remember all the details of the protocol I followed, but it involved taking a TON of evening primrose oil and other supplements.

It was actually quite helpful in general, and while it didn't make me well by any means, I did see improvements to the point that my neurologist bumped my diagnosis down to "possible" MS and then gave me a fibromyalgia and CFS diagnosis.

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Did you ever stop to think, and forget to start again? - A.A. Milne

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lymebytes
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Well amazingly I actually got a hold of the Md (radiologist) who read the films

He said he "...compared my '99 MRI w/ last weeks and there are no changes what so ever since '99, nothing is worse it is the exact same and then said that he see's this often, most peole don't know they even have them. He said they are small, you have no masses or tumors, if you were a family member I'd tell you not to think twice about this. Also, these results can be associated with anything from migraines (which I get) and (are you ready - he said...) to Lyme Disease".

There it was, can you believe he said Lyme Disease? I about died....I knew then I have carried LD for at least 9 years and wasn't even truly symptomatic until '06.

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MBB3
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Hi Lymebytes [Smile]

I've been following this thread with great interest, and we've also PM'd a while back...perhaps you remember me? Like yourself, my worst and almost ONLY sx is neuropathy...otherwise I am a healthy 39 year old male!

OK, about the brain MRI. I too had one recently...was done last month on a 3T (tesla watt) machine without contrast. If you're familiar with MRI machines, a 3T is about as powerful and sensitive as they get for the general public.

Long story a little shorter...I also had lesions.

In fact, here is the radiologist's impression, most important part in italics:

1: The are one or two punctate foci of abnormal signal intensity within the left corona radiata, the etiology of which is nonspecific but statistically most likely ischemic, ALTHOUGH LYME DISEASE CAN HAVE THE SAME APPEARANCE!!!
2) There is no area of restricred diffusion. No acute abnormality is identified.
3) Note is made of a cavum septum pellucidum/cavum vergae, which is of no clinical significance.
4) Note is also made of mild inflammatory changes in the paranasal sinuses.

Like yourself, he said my findings CAN be seen in Lyme disease. Now I will underscore that before reading the scans, he new I had a 'Lyme neuropathy' dx. However, this radiologist is essentially world-reknowned...he gives speaches at conferences across the globe, trains others how to read 3T MRI images etc. I seriously doubt he exaggerate or try to 'match' the MRI findings to my dx.

So, VERY interesting that we BOTH have VERY similar sx's and have brain MRIs that mention Lyme.

As far as tx, I recently finished 7 weeks of IV Rocephin with NO improvement. I was also on orals for Lyme. Currently on orals for Bart and have been fairly sick, which I am NOT when NOT on abx...so perhaps something is being killed?

BTW, I asked my LLMD about the mention of an 'ischemic' cause causing quadrilateral burning pain and he seemed to think it would NOT present this way. So point is, perhaps our burning is NOT explained by the brain, but rather 'peripheral' nerves? I tend to agree since I get instant relief when cool water is applied to burning feet/hands etc...I would guess if the 'brain' produced this malfunction, water would not bring this relief.

Welcome any thoughts or reactions. This is a VERY aggravating sx, but I just KNOW there is a solution.

Kindest Regards, MBB3 [group hug]

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Alv
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BART creates MIGRANES also.If you read dr J S book you will see that people had it for 30 years.

Do not be surprised if you had the bugs more than 10 years.Think about it.You probably had BART AND LYME since than!!

I DID and recall all the symtoms for 20 years for sure but even 30 years ago.IT started beeing active in germany when I had a SEVERE MIGRANE 8 hrs ( probably activated or bit again) and they diagnosed me with MIGRANES.LATER I have said if they say I HAVE TUMOR I will not be surprised.

The pain started from 1 times a year to more and more until 24/7 .

THEY STILL WERE CLUELES...even though MY SYMTOMS screamed LYYYYYYYYYMMMMMEEEEE!!!!!

But they gave me antibiotics everytime.SO they did not let it become symtomatic.I was assymtomatic as many many people are !!


Than here in usa is another story .
They had run test and never ever mentioned the disease to me ( I read it later after I collected the docs and saw it-ironicly had just self diagnosed myself and at the same time saw that this was contradictary .

Was lucky to hit this website and search on the forum at the area that I was living.The group suport send me all the details.Thanks to her .I KNEW BEFORE I COULD GO ARMED BACK TO MY PCP that he would deny it.

NO WONDER the ER would not taouch me at all whiel I WOULD end up with tachiocardia in teh ER.THEY ALL KNEW and they were still running just elisa!!

MY WBC was 1.5 comparing to minimum 4.5.My immune was shut down 4 years ago .THEY NEVER SAID a thing!!

ALL doctors here were JERKS!!!!!

At least the ones in EUROPE are clueles...but here are jerks as they know and they hide it.

MY PCP knew about it and exspected me to find out on my own.HE was preapred when I went to see him ....JERK!!!

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