Spinal Lesions in Lyme

[Suzie9]

I am trying to find out if it is possible to have spinal lesions in Lyme disease. I have heard you can have brain lesions but don't know about spinal.

I am currently diagnosed with Clinically Isolated Syndrome and have Brain and Spinal lesions. Mild symptoms. Mostly sensory. I listed my symptoms and seem to have a lot more Lyme symptoms than MS. I tested negative for Lyme but am aware that this does not necessarily mean i don't have it.

My concerns now are that this has been going on a while plus I was four months post natal when i had my first presentation of symptoms so would be worried about something like Lyme been passed on to my son. I am from the Lake district and have been exposed to ticks but don't remember being bitten.

I have heard of the Igenex lab tests but i simply can't afford that at the moment.

[wonko]

Like you, I've heard more about brain lesions and Lyme than spinal lesions.  

Have you had an LP?  If you have MS that has already caused lesions in both the brain and spine, the LP could also be positive (for proteins and/or o-bands) and that could help clarify.  

When you say "going on for awhile," do you mean that your symptoms are not remitting?  

I don't know enough to offer any advice about your son.  I know the popular medical opinion is that Lyme can't be passed on, but there is a lot of disagreement.

Good luck.

[Suzie9]

Thank you for your post.

I did have an LP but I passed out during so the procedure was not completed. At the moment they don't think it is necessary though I'm not sure why. I am on no medication for CIS despite reading that it is best to intervene at this stage.

I started with sudden paraethesia around my spine around two years ago. It was very intense to start with. This was after a severe ear infection and was accompanied by a water infection. This symptom has remained though eases with yoga and changes from tingling to burning at times. Other symptoms I have are eye twitching daily, facial twitching, muscle spasms, have had IBS symptoms for a few months end of last year, cracking neck, mood swings,hair coming out more than usual,had palpitations for a week about a year ago, tingling fuzzy feeling in toes and fingers, burning in random places all over body have had slight numbness in arm and hands, needed afternoon naps for a few months but not sure if this was just having two young kids! Can't think of more right now but these symptoms come and go, apart from eye twitching. They definitely peak when stressed and were worse for a good few weeks a few months back.

[wonko]

I'm sorry to head your LP went so poorly!  Was it done under fluoroscope?  Mine was, it helps them guide the needle.

I agree with your concerns about having a CIS dx but no DMDs.  Have your doctors given good reason for this?

It did come to mind that the trailer for "Under Our Skin" (try to find it on YouTube) does mention spinal involvement, but I haven't seen the whole film or read much about spinal lesions.  I have brain lesions, but my c-spine was clear.  I didn't have a t-spine MRI.

I agree your sx sound very suscpicious for Lyme.  In MS, the sx are less transient, they wouldn't come and go so much.  Also, it sounds like your sx are bilateral, which  would be unusual (though not impossible) in MS.  Myelin damage in MS usually starts asymmetrically, affecting one side more than the other.  

I think any physical ailment worsens with stress.  I'm glad the yoga helps some.

I guess if I were you, I'd push the doctors to do a W. blot (if you can't afford Igenex, try to get it done elsewhere for now maybe?).  If you think you can tolerate the procedure, I also think an LP would really help.  Are you scheduled for repeat MRIs?  I was recommended to have them repeated every 6 months or so.  

[Suzie9]

Hi.

My LP was not done under fluoroscope, I have never heard of it. I did have another one booked in but when I turned up they said it had been cancelled but no one had let me know.
I have an appointment with my Neuro today so will ask about it. Also will ask about repeat MRI's.

I wouldn't say all my symptoms are bilateral. My spine tingling and burning is definitely concentrated on the left side up to my shoulder and my fuzzy toes and hand are both the right side. Eye twitches mainly left but sometimes right,everything else all over though.

I will ask if I can have the Lyme test repeated at some point if I can't afford any of the other tests for now.

Thanks for all your posts.

Aimee.x

[wonko]

Aimee,

I can understand your confusion, really.  I of course am in no position to say if you have one or the other, or even both!  

I too have an odd mix of symptoms that seems to cross the lines between different conditions. I've been sick for over a year and am still fully mobile, so I'm hoping and thinking that I thankfully don't have a degenerative neurological condition.  At the same time, it seems odd that if this is all from Lyme, it manifested with neurological symptoms first.  I keep reading that Lyme usually doesn't enter the nervous system until later stages, so who knows what happened with me?    

I hope the neuro can help you and that all the appropriate tests are done.  Whatever is going on with you, it sounds like you need a better answer so you know how to treat it.

Fluoroscope LP's are done in the X-ray department at the hospital.  You lay on your stomach and they use imaging hardware to see where to insert the needle.  So they are less likely to miss or hurt you.  

Be well!

[JackieCalifornia]

My Lyme and babesia hit me hard, neurologically and otherwise all at once.  I don't know what makes the difference or how it spreads, but it seems different for everyone.

A lumbar puncture has never been recommended for me, but I did have a SPECT scan, which sees how much blood flow your brain is getting in various places -- reduced flow occurs in neuro-Lyme.

I've read elsewhere that lumbar punctures are not necessarily diagnostic for Lyme; I don't know the science behind it, but apparently the creatures are not readily seen in the spinal fluid because they like to hide elsewhere.  

Suzie9 above seems to be seeing a neurologist, and I've read and been told and had personal experience that neuros are often stubbornly against considering Lyme -- it's just not in their universe of possibilties.  Seeing an "LLMD" is imho the way to go.

Hang in there, Suzie9!

[wonko]

I agree with everything you are saying, and can relate!

I have no idea why my doctors ruled out Lyme so quickly, but based on a negative ELISA in Jna '08, that's exactly what they did.  Since I was presenting with neurological sx, I was sent on to the neuro.  When abnormalities came up on my MRI, an LP was ordered to rule out MS.  (So it wasn't ordered strictly for Lyme).  My CSF was checked for Lyme, and it wasn't found but again, I don't think it's a well-established method for Lyme dx.  I'm more and more convinced that Lyme ends up being a clinical diagnosis.

It was not until this fall that I developed arthritits and other symptoms that made me re consider Lyme, and what lead me to seak out an LLMD.  By the time I'd seen my LLMD, I'd seen 4 neuroes (none of whom could agree on much) and 1 rheumie.

I read somewhere that on average, Lyme patients spend 22 months and see 7 specialists abefore they get a Lyme dx.  So, by that measure, I'm a quick study!

Thanks for chiming in, and I 2nd your plea to Suzie9 to Hang in there!!!

[Suzie9]

Thanks for your posts.

I saw my neuro on Friday and I think she thinks I'm nuts for considering Lyme. She could not tell me if my Lyme test was the western blot test but just said it would be the best I could get and she rules it out and wouldn't have ordered it in the first place. It was just because I asked for it. She thinks I just haven't presented like Lyme and when I showed her my list of symptoms she didn't think it warranted further investigation. However i have persuaded her to let me have the test repeated at some point. She is convinced it is MS and says i have a 60% chance of going 5 years before another episode.

I am due for a Lumbar puncture end of feb.

Not sure how i feel about it all. I respect my Neuro but will keep an open mind.

Suzie.

Not sure how i feel about it.

[wonko]

I'm glad that they will try and do the LP again, and I really hope the procedure is successful this time.

Since you have MRI lesions on both your spine and brain, that is of course very concerning, and I think you should stick with the neuro.  If at anytime you again are concerned about Lyme, I would try and see a doctor who specializes in Lyme.

I can relate to how your neuro is reacting to you questioning Lyme.  I am going against the advice of my physician, several neuros, and a rheumie by seeking Lyme treatment.  They all told me, hands down, that I don't have it.  My LLMD ("Lyme Literate MD" gave me a clinical dx of  Lyme without even doing a physical exam.  

So, I think sometimes specialists are biased, or at least in some ways narrow minded.  A lot of doctors where I am (Eastern US) will not think of Lyme unless you come in with the bulls-eye rash, even though I live in an endemic area!  And while I like my LLMD, I do worry he was quick to diagnose me.    

Again, it does sound like you are in good hands with your neuro for now.  I suppose my point is, if you do want an opinion about Lyme, seek a doctor who specializes in it.  

Good luck with the LP, hopefully it will clear things up and get you towards the proper treatment.

[Suzie9]

Well I will always keep it in mind from now.

Even if my LP is negative she still thinks I am looking at converting to a clinical diagnosis of MS at some point just that I have more time until another attack, so she said anyway. If there are bands found then obviously not so good for the near future.

I'm going to stay positive though as I am physically well for now, and with lots of luck may be for some time yet. Fingers crossed anyway.

[JackieCalifornia]

May I encourage you to follow through with ruling out Lyme by an LLMD before you accept a diagnosis of MS?

Lyme is curable, and the earlier it is caught, the more curable it is.  MS, it is my understanding, is not at this time curable, but often goes through remissions over a long course.

Rather than just wait for the next attack, be aggressive about being sure you don't have something treatable (Lyme).  Also co-infections are important to test for:  babesiosis, erlichiosis, bartonella.  These are carried by the same ticks that carry Lyme.  There are many varieties of Lyme bacteria, but the tests available don't catch all of them, which is why a 'clinical' diagnosis (based on symptoms) is necessary in conjunction with the testing (which is very imperfect).

My family has tested positive for Lyme and one co-infection, and I think we may have a third one too.  As I Iook back on it, I think we got a lowgrade infection several years ago, and then I got bit again and got a really bad case of it, which after much indirection from regulars MDs, finally led me to an LLMD.  I had my family tested too, since we've all been to the same places, and the result was positive ... although I was the only one who got neuro-Lyme that messed me up so badly.

So you can have Lyme+ and have it lingering and dragging you down, much as I understand MS does -- but Lyme IS treatable.  Don't give up --

Best wishes --