Have you had an MRI of your brain?

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Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 8/29/2010 9:48 PM (GMT -6)   
Ok, I could not get an appointment with a LLMD until Sept. 16th.  My PCP gave me amox for 30 days.  She also gave me a referal to an infectious disease doc.  He was quite arrogant when I brought up lyme and we had quite a match--fortunatelly I had a good day and I kept up and responded all his denials of lyme with information that I could easily retrieve from my brain, since I didn't have a foggy memory that day.  He did "amuse me" by ordering the tests for co-infections and he also recommanded I see a neurologist and have an MRI of my brain. 

He said I probably have MS, not Lyme, although I showed him my + Lyme tests.  He said that he always tries to eliminate other possible diseases.  I didn't expect much, I knew from what I have read here the medical community is close-minded when it comes to Lyme.

Did any of you had an MRI of their brain and if so, what did it show?  I asked to be tested for Mycoplasma, but he said it is not common and that I don't have it?  So he tested for Babesia, Bartonella, and Ehrilichia.

Dagger
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Date Joined Apr 2008
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   Posted 8/30/2010 1:39 AM (GMT -6)   
I've had a few MRIs of my brain and they showed nothing abnormal. I think it's a good test because it can help rule out other causes for CNS symptoms.

Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 8/30/2010 7:55 AM (GMT -6)   
Like Dagger, my MRIs showed nothing abnormal - according to the regular docs. Funny thing, though - I recently came across a SPECT scan that was done on my brain a few years ago & it stated that I had reduced blood flow in 2 different areas of my brain!!

It is my firm opinion that docs will only see what they 'want' to see!!!

It does sound as if you will have you hands full, should you choose to continue to see this doc, but I really did get a giggle out of hte way you handled him!!!

The docs' way of "trying to eliminate other possible diseases", with a positive for LD in his hands makes me wonder if he saw a pregnant woman he would say to her that she needed to have a whole bunch of tests done to be sure it isn't some other disease that is causing her stomach to bloat so badly?????

It's a good thing you are going to go to a LLMD!!!
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 8/30/2010 8:18 AM (GMT -6)   
I had an MRI of brain and it showed numerous lesions consistent with CNS lyme or MS. However, neurologist knew nothing about lyme and neither did infectious disease dr. Neither could help in my fight to get IV antibiotics with insurance company who insisted on spinal tap, which I refused to do. Thank god found LLMD who moved ahead with other treatment options.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

Razzle
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Date Joined Aug 2007
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   Posted 8/30/2010 9:10 AM (GMT -6)   
I've had several MRI's but they were all normal.

Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 8/30/2010 9:15 AM (GMT -6)   
Trav:

When he said to me that I might have MS, I said to him that that's all the docs say to their patients when they can't figure out what is wrong with them OR they don't want to diagnose them with lyme! Oh, we had quite a match! He said to me that he can keep up with it! So, I said, So can I! I am having a good day today! He said Lyme pain doesn't come and go, so because my pain is more severe one day than other, he said I don't have Lyme. I said, well then look at the tests! He said they are innacurate. I explained to him that Lyme D. should be a clinical diagnosis and that if 5 of my tests are innacurate and they are all +, we might as well not run anymore tests for anyone! What's the point?

He said I was being difficult. I said, are you going to write that in my records? He said, oh no, that won't look good if you try to sew me, your lawer will say, look, he told her she was difficult!

At the end he said, it is a good thing we are not married bec. we could never get along! He asked his nurse for some tylenol, suggesting I gave him a headache! I said, oh, good! My work here is done! He laughted and shook my hand! You would have giggled for sure if you were there! LOL

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/30/2010 9:23 AM (GMT -6)   
Springjean:

Why did you refuse the spinal tap? What's the risk? I don't think is very accurate, is that the reason you didn't want to have it done?

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/30/2010 10:02 AM (GMT -6)   
Well, the infectious disease dr said that people with lyme have holes in their brain. I said to him, I don't think I have holes yet, I want to you to treat me so I won't get holes. I wonder if the MRI will work against me, and the insurance company will refuse to pay for treatement, if my MRI doesn't show anything... MAYBE I should not have it done??? Memory problems are minor compared to my other symptoms, although I keept calling my friend the whole week, because I forgot she went to England. Memory problems come and go...

This guy was so arrogant, he told me to tell him the most severe symptoms, bec. we have to get through it before the day is over. I was in his office for 30 min! How can he determine if I have lyme based on 5 symptoms if I have so many more symptoms???

He warned me that he types very slow, which I found to be true. I said, can you at least read my symptoms? So, he did, and he said, you have to see a neurologist. I said, well, now we are getting somewhere, at least you can read much faster than you can type! So, I am trying to find a neurologist, now.

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 8/30/2010 10:37 AM (GMT -6)   
Wow, Simela...what an unprofessional, awkward, frustration, and disappointing experience you had. I would have walked out the door before spending my time arguing with a medical doctor about common sense.

Pain from Lyme disease absolutely comes and goes - it's known to be cyclical.

It was my understanding that M.S. is diagnosed through confirmation of MRI abnormalities... I had an MRI done by an excellent rheumatologist and it was ruled out.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/30/2010 11:26 AM (GMT -6)   
As Madrivergirl said - that kind of pain is typical for LD! Same goes for all of the symptoms - they can hang around for a long time, or they may come & go, or even hang around for a while and have the severity ebb & flow!

Actually , Simela, I would have been in the corner doing more than just giggling!!! I would have been rolling on the floor from laughing so hard!!! Kudos to you!!!!!! I'm an old fuddy-duddy!!! Giggle!! Like Madrivergirl, I would have walked out as soon as I figured out that he had his head up an orifice!!! After all the years that I have been going from doc to doc, I guess I just don't have any patience for the ones who won't consider the possibility that they don't know it all!!

Back before I had realized I was dealing with tick-borne infections, I did have one doc that was just sure I had MS. He kept wanting to do a lumbar puncture & I kept refusing!!! I've had one bad experience with losing a little too much spinal fluid back when I had an epidural in order to deliver my daughter - that's all it took for me!!! Anyway, I kept pointing out all of the symptoms of MS that I didn't have!! He never even swayed from his believe that I had MS & I needed to start treatment before it was too late!

Post Edited (Traveler) : 8/30/2010 11:33:03 AM (GMT-6)


Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 8/30/2010 12:14 PM (GMT -6)   
Trav:

1. WHY did you refuse the lumbar puncture? Were you afraid of possible damage to your spine?
2. I had 3 epidurals. Last one I had was Nov. last year. I have had back pain for a while, I am a lot better now. Not sure if it is from:
a. the last epidural
b. holding my baby
c. degenerative disk disease, which showed on my xray or catscan at the time of my accident

I NEVER had back problems before and it got worse after delivery... How can I have degenarative disk disease and not know it???

I think I will not have the mri, I will wait to see how my blood tests come back and wait on the mri, see what the LLMD has to say, first.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/30/2010 12:18 PM (GMT -6)   
DID YOUR LLMD SUGGEST AN MRI, or there were other docs that asked for it?

BTW, my match with the infectious disease doc did not stop there! I asked him to send my blood to Igenex and he said he won't do that bec. all of their tests come+. I said, maybe is bec. a lot of pple are sick? He said, NO! He said he sent distilled water to Igenex and in came back + with lyme and co-infections! Now that is hard to believe! I am usually nice to docs, but he was just annoying! So I annoyed him right back!  I got some satisfaction for doing that, although I got upset he didn't take me seriously, especially bec. I am sick, and he didn't give me any medication to make me feel better!  He also ridicule me when I told him that I got swellen soles to the point I could not walk for a couple of weeks, I could not swallow anything, I was sick and I thought I was going to die, my lymph nodes were swollen--that was 10 years ago.  I have had caughs since then that will last weeks up to 2 months.  Bronchites, as well.  I told him I had liquid in my soles, because that was the best way I could describe it at the time, in my own words.  I told him I was treated with 3 weeks of Cipro and he said Cipro doesn't do anything for lyme.  I see other people here being treated with Cipro, here.  MY GUESS, based on my own research for the past couple of months: I got infected 10 years ago w. Lyme and Bartonella.  The Cipro made it slow down, but did not cure it.  Then last year, when for the first time I tested for lyme (i was not treated for co-infections), the test came +, which followed another 3 weeks of abx that helped but again, did not cure it.  After my accident, all this came back to hunt me and after the steroids shots, my symptoms became increasingly worse.

It is just a guess, we'll see how my tests come back.  I took 1 week of abx prior to the blood work, so I am not putting much faith in the tests, unless they are +.

Post Edited (Simela) : 8/30/2010 12:41:38 PM (GMT-6)


josh1983
New Member


Date Joined Jul 2010
Total Posts : 19
   Posted 8/30/2010 3:13 PM (GMT -6)   
A few weeks ago I had my first appointment with a LLMD.  My only major symptom thus far is muscle twitching.  My LLMD ordered a few more blood tests as well as a brain MRI.  So it must not out of the ordinary to have a brain MRI if you are experiencing neuroligical symptoms

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/30/2010 3:40 PM (GMT -6)   
The main reason I refused the lumbar puncture is because I didn't believe that I had MS based on my symptoms at that time (but pleeeeeaaase don't ask me what my symptoms were!!! eyes ) I did have a second reason - I had an epidural when in labor with my first child & I guess they weren't as careful as they should have been (?) because I leaked "some" spinal fluid & had a major migraine for two days!! This was all before I realized that I was infected with a bunch of tick-borne illnesses.

I would probably submit to one now, if I had a doc that I felt was knowledgeable enough about tick-borne infections - but that's not likely, due to the area I live in!!

I know the frustration about not having a condition, having a child & then having having issues!!! I had gone back to training horses during the time between my 1st & second child - so believe me when I tell you I had NO hip issues before giving birth to my second child. He got stuck - yep!! stuck (!! smhair) & they had to use forceps (sp??) in order to get him out, but the doc had to overlap his skull & push outward on my hips in order to get him here. Ever since that time, I have had issues with my hips.

I would encourage you to wait on any more tests until you get in to see your LLMD, as he will send you to labs that know what they are looking for. And who needs the added expense & frustration of dealing with those that won't believe us anyway!

I definitely wouldn't have walk out of there alone, or a free woman!!! smilewinkgrin I have a mouth that would have definitely gotten me into big trouble when he said that he sent in distilled water & got back a positive for LD!!! I used to spar with docs all of the time - I educated myself on whatever they were trying to diagnose me with, and go back and tell them why I didn't fit their diagnosis - didn't go over well usually. I have been ill for most of my life - my Mom & I believe that I was infected with RMSF (the spotless kind though - funny since I'm absolutely covered in freckles!) at the ripe old age of either 5 or 7 years old. I grew up being told that My medical issues were 'odd', 'unique', 'unfortunate', and that I sent them "back to their books with great regularity" - so I started to teach myself how to understand at least some medspeak. Got me into a lot of trouble too (giggle!), but I believe that it has saved me a lot of unnecessary agony as well.

Sorry about getting up on the soap box - again!
Steroids are know to push tick-borne infections to go deeper into the tissues & organs.

I sure don't have a clue how a person could have Degenerative Disk Disease & not know it!!! My Hubby has an advanced case, and believe me - he is in a lot of pain daily for many, many years. Makes me wonder if those docs even knew what they were looking at?? My Hubby actually had an MRI (I think) done one time & the tech who read it said he found no damage to this one particular disk, when in reality those two vertebrae had been rubbing together for so long that in a previous MRI three years before had shown that he not only no longer had a disk there, but only had about 2/3rds of the bottom vertebrae left!!

Oh wow!! sooo sorry for such a long post!! blush
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted 8/31/2010 7:36 AM (GMT -6)   
Get a SPECT scan of your brain done if possible.  An MRI shows how your brain Looks.  A SPECT scan shows how your brain is functioning.  Google SPECT Scan and Lyme Disease to get all the info.
 
I was also given an early diagnosis of MS by a closed minded neurologist.
 
Find the nearest Lyme support in your area.  Also continue to visit this forum.  I would give longer answers and more info but the fingers joints are cranky today.
 
Best of luck
 
saxmar

Simela
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Date Joined Aug 2010
Total Posts : 552
   Posted 8/31/2010 2:41 PM (GMT -6)   
Trav:
I feel like covering my face with a pillow and scream as loud as I can! So, don't feel bad about soaping, soap away!

Saxmar:
I will talk to my PCP about a SPECT scan, I have ran into this before. In all honesty, I feel like the infectious disease doc is not going to help me, so I feel I am wasting my time and money on the MRI. He was strongly suggestive of MS. Thanks!
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