tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Hello there, my results are back.
I had some "cells" present...
CSF Nucleated Cells H 7 (0-5)
CSF Red Cells 2 (0-10)
CSF Lymphs 6
CSF Mononuclear Phagocyte 1
Also, I had some Oligoclonal Bands
CSF Bands 10 (<4)
And of course my Lyme and Mycoplasma were negative but my neurologist is still suspecting it's Lyme. The next step is an MRI w/contrast. A little worried about complications from contrast injection. Anyone have input on the contrast injection?
I'd love to hear anyone's input on my Spinal Tap results....
Posts: 2541 | From Northeast | Registered: Jan 2008
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I have had many MRI's..... never had a problem with the contrast..
Drink lots of water after...flush it out of your system.....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Tutu,
I guess they're just trying to be thorough since I have so many neuro symptoms. I'm guessing they'll be looking for lesions on the MRI.
mtree,
I'm already feeling very toxic so I am concerned about polluting my body w/even more stuff. Lately I'm suspecting Leaky Gut Syndrome and a yeast die-off from Diflucan and am starting to try and detox somewhat.
Do you think that w/that being said that the contrast would be of concern for me?
Posts: 2541 | From Northeast | Registered: Jan 2008
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I have had at least 7 MRI's with contrast...and never had a problem... the dye really isn't long lasting...and I was always told to drink lots of water afterwards....
if you have concerns talk to the techs....talk to the person that is giving you the injection... they should be able to ease your mind....
you'll be fine... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Contrast is not necessary to get a good look at any possible lesions. It's true that contrast will make it easier for the radiologist but it is absolutely not necessary to detect lesions. (I'm assuming that is what they are looking for considering you had O-bands).
My husband has had maaaany MRIs. We now see dr.p in Ct and he does not order contrast. Why have more stuff in your body than absolutley necessary? Jmho.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
If you have been treating Lyme with antibotics- Spinal taps are very common to come back Negative for Lyme. You are supposed to stop antibotics for a month and do the spinal test to get the most accurate read. Last I knew. That's what one of my doctors told me anyway.
I have had many MRI's and had no problems with contrast. Along with MRI's without contrast. Neither of them gave me any problems.
Best of luck to you!
Victoria
Posts: 82 | From New York | Registered: Feb 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Thanks everyone! It makes me feel a lot better to know that a lot of my fellow Lymies did ok w/the contrast.
I remember reading a post on here that said someone's lesions didn't show w/out contrast but did show up with.
Here's a question. Where will they be injecting me?
Posts: 2541 | From Northeast | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Spinal taps are worthless 90% of the time. A Brain SPECT scan would be more useful. MRI's are worthless 80% of the time. So MRI's are slightly better than Spinal Taps, and a lot less painful. Watch for symptoms after your MRI, such as a Herx reaction. A lot of patients are reporting that MRI's worsen symptoms. I have no idea what specifically is going on.
Additionally I have a name of a Lyme Literate Neurologist in Connecticut if you need one.
-- Mike
P.S. The guy who did my spinal tap hit my spinal cord. That son of a.....hurt like a mofo. Oh and it was negative. Shocking...
-------------------- 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.
posted
your neuro suspects lyme......that's a first for me
I have had the MRI's with and without contrast....if it is lesions you are looking for you don't need the contrast...I was told that it makes it easier to read the results....
more importantly is where you get the MRI....not all machines are of the same quality........and not all radiologists are either
My MRI's have never changed the course of my abx treatment.....they are used for documentation
As for a spinal.....the stats I found along time ago said only 20% accuracy for lyme testing...a negative on you spinal is used by some insurance co. to refuse treatment........it happened to me
-------------------- 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 just had an MRI with and without contrast yesterday, my third since October. I haven't had any problems at all with the dye. They use the dye to show if there is a breach in the blood brain barrier. There shouldn't be a breach, so if they dye shows up on your scan it means the BBB is letting in something that it shouldn't. In MS, this shows an "active" lesion. I have an LP next monday and was actually brave enough to go off of antibiotics for 4 weeks. I will let you know if Lyme does show up, even though I have heard it is really not likely. My neurologist has already said that he doesn't believe that I have lyme, so I guess even if it does show up...he will discount it like he did my western blot that was CDC positive!!
Don't worry, I have an appointment soon with the LLMD in Missouri.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
soonermom,
I had an LP a couple weeks ago. I don't want to worry you but it wasn't a pleasant experience. You may want to consider postponing it until after your LLMD appt. Don't you already have a positive WB? I don't so that was part of what made me do it.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
I guess since I have numerous white matter lesions in my brain and symptoms of MS, I need to make sure that I am not leaving any stone unturned. I am 95% sure that this is only Lyme, but the other 5% is why I have agreed to do another round of testing before I turn myself over to the LLMD. The LLMD is not going to be able to order my next MRI to see if there has been any progression going on in my brain.
Everyone has to feel comfortable with their own decisions about their health.
tickled1
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Member # 14257
posted
I'm sorry. I'm not trying to make you feel bad about your decision. Do you have someone to help you during your recovery from your LP? My husband took the week off to help me and it was necessary.
Neither one of us was prepared for that so you may just want to have someone lined up.
Posts: 2541 | From Northeast | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Did anyone notice a significant worsening of symptoms after their MRI's -- or within a few days after the MRI's?
-------------------- 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.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Metallic,
Is this worsening temporary?
Posts: 2541 | From Northeast | Registered: Jan 2008
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Michelle M
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posted
The MRI was really easy. I had it with and without contrast. A closed one is better, though some may have claustrophobia problems.
I actually fell asleep during my second one. (But I fall asleep a LOT.)
I would not worry about any of it!
Pretend you're at a really loud concert.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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METALLlC BLUE
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Member # 6628
posted
Yes, the worsening would be temporary, perhaps lasting a few days, or it could be severe and last a week. Most people report about 36-72 hours and then symptoms appear, and then settle.
-------------------- 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.
quote:Originally posted by METALLlC BLUE: Did anyone notice a significant worsening of symptoms after their MRI's -- or within a few days after the MRI's?
We've had people here who felt much BETTER following an MRI!
Go figure!!
sooner....... sorry for my reaction, but i've been here nearly 8 yrs and hate to see the same things happening to people over and over again.
I feel it's my responsibility to inform and warn.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hi everyone.I agree with Lymetoo on the LP as I've had three in the past, only helped the ducks to not treat me.
If you do it ask them to do a blood patch as this will reduce the chance of leakage ,= headache !!!
I've also had at least 8 MRI's with contrast and they never did bother my symptoms.
It does bother me that the insurance co will happily pay for all of those tests but not my lyme tx !!!!!
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
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METALLlC BLUE
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Member # 6628
posted
quote: We've had people here who felt much BETTER following an MRI!
Go figure!!
sooner....... sorry for my reaction, but i've been here nearly 8 yrs and hate to see the same things happening to people over and over again.
I feel it's my responsibility to inform and warn.
Yeah that's what I'm getting at.
People seem to be reporting that they Herx, and then feel better post MRI. Some report just flat out feeling better too.
It's been an interesting pattern that I think runs parallel to the Rife reports.
-------------------- 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.
quote:Originally posted by buckfever: I agree with Lymetoo on the LP as I've had three in the past, only helped the ducks to not treat me.
OH yeah. That too!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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canbravelyme
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Member # 9785
posted
Hi,
My first MRI was of my knee. I felt like my magnetic field was scrambled. This was prior to any treatment and diagnosis.
2nd MRI: of my brain. I felt some relief in my head during the procedure, and like Michelle, I tended toward falling asleep.
I've only taken contrast for CT: shellfish based, which is different from the MRI dye, I recall. I think I'm more sensitive when I eat fish: ie developing an allergy.
May you be well and happy,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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tickled1
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Member # 14257
posted
If MRI can cause a herx, should I wait to start my new abx combo (biaxin/plaquenil) until a few days after the MRI?....or else I won't know what I'm reacting to.
I'm being cautious b/c I'm in really rough shape right now and don't think I can take anymore. I'm in terrible pain.
Posts: 2541 | From Northeast | Registered: Jan 2008
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METALLlC BLUE
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Member # 6628
posted
The best thing to do is talk with your doctor, and tell him/her how you're feeling about starting. If waiting a short period is what you want, then tell him/her. I doubt a few days more will make a big difference regardless, and he/she probably won't mind.
Be aware though, that you will not likely see a response (Herx) to the Biaxen and Plaquenil for a week or two, -- maybe longer, so it's probably fine to go ahead and begin as scheduled. Either way should be ok.
-------------------- 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.
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