Topic: Down the tubes again. (The MRI tube, that is.)
Michelle M
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Member # 7200
posted
I've been in treatment almost a year for neuroborreliosis. I'm what you call "lucky" in that lyme seems to have infected only my brain, and arms. Resta me is A-OK and I don't have the joint problems so many of you suffer. I suffer mainly from headaches, memory issues, fatigue, and cognitive stuff.
Saw my LLMD Thursday and he agreed I am on a downhill ride the past few months. Increased headaches (nearly back to full time), the getting lost thing again, inability to remember client's names at work. Blah blah blah.
Biaxin/Omnicef/Plaquenil had been abbreviated because Biaxin had a "severe" interaction with migraine meds, leaving me only on Omnicef/Plaq for several months. The bugs apparently enjoyed the vacation - the Omnicef was doing nothing by itself.
Also, it has been a year since my last MRI. So the following day I found myself at the Imaging Center for another closed brain MRI, this time with and without contrast.
The radiologist was asked to compare it to last year's to see whether any lesions have gone away with a year's treatment, stayed the same, or will prove to have been a foolish error or dust on the lens of the MRI machine. Hopefully I won't have any new ones after pounding on them for a year!!!
I also asked that they count them, as last year my neurologist was too lazy and refused to count them, claiming if I wanted to know how many there were I could just call the radiologist, since it was "not his job." There were 11.
Has anyone done a repeat MRI after being in treatment for a year or so? Any experience with MRI's "with contrast" -- ? What more do they show than a plain ole MRI?
Thanks!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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A MRI with contrast shows the lesions better than without. I had a few lesions and just about every neuro symptom. Headache, eyepain, tingling , numbness, weakness, fatigue, neck and back ache , sore muscles, presently my mind is clear, but I have certainly had the fog. I guess I am fortunate not to have bad arithritic pain. My first MRI was without contrast and that didn't show any lesions. The radiologist read this one as negative and neurologist saw a few lesions??
Posts: 41 | From new york | Registered: Mar 2006
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Jill E.
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I've only had the one MRI, after more than two years in treatment, and I do have lesions and tons of neuro symptoms. My doctors and I decided to do it first without and then with contrast, all in the same session. This was a major decision because I had an allergic reaction to the gadolinium contrast dye in the past. However, I was told that the MRI with contrast would be far easier to read and more accurate. So we used half the dose of contrast and it still worked out. Was there a reason to avoid contrast for you, such as allergies?
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Michelle M
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Thank you Jill and Patti.
There was no reason to avoid contrast a year ago, except then I didn't know I had Lyme. I was going from duck to duck to endrinologist to neurologist trying to find out why my head was exploding! The MRI was -- I suspect -- to rule out a brain tumor.
I didn't have any problem with the dye and the machine was WORLDS better than last year's "tomb" - an old Siemens high field magnet housed in an 18-wheeler out in the parking lot of the imaging place!
Diagnosis came late for me, like many here -- SELF diagnosis, with a LymeNet referral to an LLMD, western blot, and all the rest.
Jill, after two years, will you repeat your MRI to see if they are gone?
Thanks,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Jill E.
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Hi again, Michelle,
Like you, I diagnosed myself and finally found a LLMD and got the right tests done - I went through similar stuff to you and others - seeing neurologists, rheumatologists, infectious disease doctor - got the old "There's no Lyme Disease in this area" routine, must have MS, etc.
My LLMD did not request the MRI so I doubt there's any rush to repeat it. My internist requested it, because even though I've had a confirmed Lyme/coinfections diagnosis since 2004, he doesn't have experience with Lyme and still had that lingering doubt that maybe it was MS and he had missed it. So we did it (at my great expense!!) just to put the old MS issue to rest.
My LLMD said mine were Lyme lesions. We never discussed whether they will go away. Personally, I'm just interested in my symptoms improving, whether or not the lesions remain there. Were you told that lesions could definitely disappear? I had never even thought about it until this post.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Michelle M
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quote:Originally posted by Jill E.: the old "There's no Lyme Disease in this area" routine, must have MS, etc.
Boy, is THAT familiar!!!
Were you told that lesions could definitely disappear? I had never even thought about it until this post. Take care, Jill [/QUOTE]
Research (which I'm too harebrained to find!) seems to indicate about 50/50 chance of them resolving with abx treatment.
We did the repeat MRI as my mental status going to he11 in a handbasket and headaches are really bad. Really having a hard time working, thinking. Switch meds, fight Blue Cross to get back on IV, consider Bicillin shots, minocycline.
Took daughter to craft store after work last week, leaving, I may as well have been deposited in the middle of a foreign city, no idea which way to turn or where to go. In fact, keep forgetting on the way there where we're going.
I would NOT like to find out the lesions are worse after a year of abx. Maybe I'll be reassured if at least they don't look worse.
With my LLMD's help, I am a long way from giving up. Many weapons remains in the arsenal! We are far from tapped out!
And hey -- on a good day, I don't even remember!
"Giving up is not an option."
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I had the MRI because my neurologist was ruling out MS also. My rheum is treating me for lyme my tests are neg but I have pulled many deer ticks off. Had to have a spinal tap twice, again ruling out MS. I start rocephin IV next week.
Posts: 41 | From new york | Registered: Mar 2006
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Michelle M
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quote:Originally posted by erpatti: My rheum is treating me for lyme my tests are neg
Hi Patti, weren't you going to try and post your IGeneX bands, come to think of it!??
Didja get ahold of those? I'm curious to see your rheumie's idea of "negative."
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
You might want the radiologist to not only count the number of lesions but to describe what area of the brain they are in and the approximate size of the lesions.
Hubby got frustrated at last MRI report -- have lost count of how many he has had -- report simply said "several lesions" and something like "minimal change from prior report".
Anyway, last 2 MRI's were a year apart -- neuro symptoms somewhat worse but may have been one less lesion -- down to 4 from 5 on prior report.
Hubby still has severe neuromuscular symptoms but his brain is the clearest it has been in the 5 years since he has been ill.
He still has lapses following multiple daily seizure-like episodes, but overall brain function is improved even then (he usually knows me and I am not the nightnurse anymore).
Quinine/Clindamycin for Babs helped, then Rifampin really woke things up even though he only managed a total of 20 pills and more recently IV Primaxin and oral colloidal silver both have helped with brain function.
Supplements that help the most with the brain in my opinion are COQ10 (400 mg), Resveratrol, and Phosphatidylcholine (P.K. Protocol). The supplements helped with brain fog, whereas the meds helped more with concentration and memory.
Bloodflow issues could be a major cause of your headaches (hperperfusion) -- would need a SPECT scan to show this. Wish I could get hubby to Columbia to have this done.
Looking forward to seeing your MRI results.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Michelle M
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Hi Bea. They were REALLY thorough before, lesions were described in the "subcortical deep white matter of both hemispheres, most prominent in the left frontal lobe of the centrum semiovale." "Largest of these measures 5mm in diameter."
I am glad hubby's are down from 5 to 4 but I know it hasn't been an easy road for him to get there. I've never suffered any seizures, fortunately.
I do take Topomax prophylactically for headaches. My head hurts so much I occasionally think I must be going to have a freaking stroke. :-(
Should have results early next week. LLMD's office knows the drill: "Fax me my report YESTERDAY ALREADY, please."
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
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Also, after it's done, I was able to get a burnt CD of brain MRI staff t clinic
As you know I too have lesions. I have had 2 follow up MRI's both with contrast. One at 6 months and one at a year.
My lesions were stable in both. It is my understanding if it were M.S. this would not be the case. Don't M.S. lesions constantly change?
My neuro stuff has gotten much better. I wish my body would follow suit. Although for the most part it is. Twiching has for the most part stopped.
I am now struggling with fatigue and fibro. I have for the last week not needed Klonopin to get to sleep.
I have even been looking to return to work. However being out for almost 4 years does not move me to the front of most lists.
I hope things turn for you soon.
Take care and peace.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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Michelle M
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Hey, PRConn! "Stable" is a good thing to hope for, since you're right, MS lesions are supposed to change frequently, maybe even with each "attack."
I was originally dx'd with MS (like everyone else) and it often feels like these are attacks rather than herxes because instead of days, these episodes last for weeks and weeks at a time before relenting.
Yeah, I know, herxes can last for weeks or months.
I'm glad your neuro symptoms have gotten a little better. I remember when you had some VERY bad times and finally "emerging" after many horrible months. I hope things continue to get better!
ImaNurse, hope your headaches improve soon. Relpax is my rescue med. Can't take it often, so I save it till headache is about an 8. Unlike Imitrex, Relpax seems longer-lasting; keeps head pain at bay for almost two days rather than Imitrex's one-day (tho quicker-acting) relief.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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NP40
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My son had lesions per-his MRI at the beginning of treatment. They were still there at 8 months. At 15 months they were gone. So it's definitely possible to eradicate them.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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I'm so sad you are feeling awful...you inspire me so much!!
I wish I could give some MRI insight but I only had one (with contrast) in July 05 and didn't have lesions dispite horrific headaches.
when I was diagnosed in Jan, I asked for another MRI since I had endured a year of these horrible neuro symptoms but was told no...not necessary.
I guess I was out of fight...don't know what it could help to know I have em now but wondering if the spect scan offers more information than an MRI for lyme?
I am praying for better news from you. I can't imagine going back to the fog brain and pain brain I was a few months ago. Seems the biaxin has really helped me the most but could be just time in treatment...
Hang in there! Kim
-------------------- We are spiritual beings on a human journey...
I can relate. I have a MRI scheduled for Tuesday. I had one lesion 2 years ago seen on a MRI without contrast, but I am asking for contrast dye this time.
Unfortunately I am claustrophic and noises set off my seizures. God bless my friend who is taking a drugged up crazy woman for the MRI. Blessings. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10174 | From Illinois | Registered: Aug 2004
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Some of the newer MRI facilities have either piped in music or headphones I think so you can listen to music.
If that is not an option, the cottonballs in the ears trick can help a little.
Hubby is less noise sensitive than in the past, but I always give him a dose of IV Ativan before any kind of medical procedure. You could ask for oral Ativan if you thought that would help.
If he concentrates too hard on trying to lie still and not move, then he has much worse shaking/seizure-like episodes later in the day -- usually hits him as soon as he tries to get off the exam table.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Michelle M
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Imagining the machine to be as raucous as last year's model, I requested of my LLMD one Xanax "for the road." Instead, I got an Ativan sample.
That, plus the newer spiffy model MRI, plus some earplugs, and I was good to go.
Some parts of it even reminded me vaguely of a nice scalp massage.
They pull you out halfway through to inject the contrast into your arm, which burns, and altogether interrupts one's reverie entirely.
Yep. Some more of that Ativan might be nice to have laying around the house.
Human, a SPECT is sometimes done to see whether there is hypoperfusion due to lyme in your brain. If you've had a positive MRI, then it would not likely be done (or at least not on insurance's bill!). Many lymies with "normal" MRI's have hypoperfusion, accounting for memory problems, brain fog, and cognitive problems. Regardless of whether one's done, treatment is still the same.
Hiker, please let us know how yours turns out, okay? Lesions begone!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Michelle- Have you had a course of IV Rocephin yet? If not get it started ASAP- it saved my life,
I was bedridden for 6 wks and going downhill fast - heart stopped- appetite gone - lost 40 lbs- tremendous pressure in my head- ears ringing etc. etc. etc. -- in all 44 separate symptoms. I made out my will and waited (& even wished) to die.
My MRI w/ & w/out contrast showed nothing abnormal. Drs. all shook their head and said "we don't know". I finally decided to treat myself for Lyme after 3 months of telling 9 different Drs. that I sure had alot of the symptoms.
So after only THREE DAYS of oral Doxy 400mg/ day I had a 30 % reduction in symptoms and demanded IV treatment. 8 1/2 wks Rocephin 2gm/day was like a miracle, I made it back to 90% and even worked 12 hr days 1 mo after IV started.
I believe most LLMDs would agree that IV treatment is STILL the very best way to treat neurolyme and in my opinion you should start it immediately. Go for the 4gms/day at 4days/wk for 10-14 wks or until improvement.
Orals are good but the IV has the best blood brain barrier crossing ability by far.
Good luck-- I've been there and made it back
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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I hate the "tube". I keep my eyes closed the whole time. I didn't think about the ear plugs - that would have been helpful since I have sensitivity to sound.
I was told to make sure I drank tons of water afterwards to help get the contrast die moving out of your system after.
I have thought about a spect scan too but I was also told by my LLMD that he would treat me the same anyway. It would possibly be helpful in documenting cognitive problems for disability application.
I don't know anyone who's had a spect scan so I don't know how the procedure differs. Do they put probes on your head like on an EEG? If they inject a radioactive contrast I would worry I would be glowing too much after having an MRI recently. I suspect there is a limit to how much contrast you should have in a short amount of time.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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david1097
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If you have problems in the MRI machine due to the worm hole effect (ie uncomfprtable in the tube) you might want to try to find a place with "OPEN" MRI. This is differnt design machine that has a disk on top and bottom with the table in between, like a hamburger(you being the meat). It is completed open all around. A lot of people use it in prefernce to the tube type machine.
The contrast is a gadolinium compound that is used to detect disturbances in the blood brain barrier. Things like tumours will show up as very bright.
Posts: 1184 | From north america | Registered: Feb 2003
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Michelle M
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Hi Hope - I did IV Rocephin early on, but only for a month. You know the drill. According to Blue Cross, I'm cured!!
Snowflake, good luck getting your insurance to pay for a SPECT! I haven't had one. I DO know many lyme patients have abnormal spect scans and it could certainly be helpful to document impairment in a disease where documentation is often hard to come by. It does seem to be important where you have it done and who interprets it.
David - thanks for the info on open MRI. It's available here, too. However, I chose the closed one, i.e., "the tomb." My neuro duck and radiologist stressed to me that they get a much better picture of the brain in the closed one, despite patient preference for the open one!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bpeck
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Michelle:
All my symptoms were neuro also. I know the 8 year headache routine- I could feel the head ache pinnacle migrate around inside my head -
Another Lyme friend and I compared head ache descriptions- (she's had 15 MRIs between Dartmouth Hitchcock and Mt Siani - I have had zero because of the arquing between Dartmouth Hitchcock/Mt Siani on her case)
We both had severe pain at the confluence of the sinus (right occipital lobe) and she has a lesion there. We both lost part of our visual field in one eye - she has a lesion at the optic nerve/brain. My vision has returned completely- her''s almost... and we both had Posterior Uveitis, tinnitus and trigeminal nerve pain.)
We both had what we described as volcanic head aches- little ones that build in one area and get pretty unbearable.
Seriously. I had a variable head ache for 29 days of every month - for literally several years (along with eye probloems),. I was taking about 400 grams of ibuprofen a year - for several years (I didn't really care if I died of kidney failure - cus I figured my brain would explode first)
She was the same. Her 10 or 15 MRIs show lesions coming and going in various places in the brain- sometimes changing within a day or 2 ( she had 5 MRIs over a weeks period while hospitalized)
Michelle- Contact me privately (private message)- and I'll try to put you two together to talk.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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