posted
I am scheduled to see a 2nd neurologist this Tuesday (6/12) to try to diagnose my nerve problems (see "Relapse 4 years later?" below). My local neurologist has proved to be less than helpful.
I had a brain MRI (with dye) yesterday, have the CD and will get report/films on Monday. I also have current MRI's of neck (c6) and back (t8), 2 EMG/nerve conduction studie, CBC, Serum Protein Electrophoresis, Comperhensive Chem 14, and "Lyme Disease Antibody 015271" (IGG/IGM AB) tests.
My question is, with all this in hand, will the neurologist be able to diagnose MS vs Lymes? my nurse friend tells me he should be able to due a "lumbar puncture" (spinal tap) and be able to perform "clonal bandings" in order to confirm/rule out MS as well as.....confirm/rule out lymes?
I want to believe this neuro can help me, but after everything I've in last week my mind is a blur of test and procedures, false negatives and positives, and conflicting information. Has anyone had experience with the spinal tap (alng with the other tests I describe) and were they able to diagnose lymes vs MS?
PS > I am driving 300 miles (one way) to make this appointment.
Thanks, Please, and Help...
LocalMan (Dan)
[ 10. June 2007, 10:43 AM: Message edited by: LocalMan ]
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
ByronSBell 2007
Unregistered
posted
If you have had a lyme diagnoses before then I would say 100% it is lyme disease!
IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my docs-both lyme and primary-have told me there is no test that will tell you you DO have either. they look at 3 things to say it is MS...but none of them give an absolute yes or no.
lyme of course is a clinical dx-sometimes the testing helps confirm that.
we know ms tx will hurt you if you have lyme.
some people's ms goes away with lyme tx.
seems you should try lyme tx first...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
Thanks much for info, That leads to next question: WHICH MS TREATMENTS/TESTS MAKE LYME WORSE?
I already cut off the steroids (prednisone) an Othropedist gave me, but which other treatments or tests are known to make lyme worse?
Please forgive my ignorance of all the tests and lingo, as I am new to this, when I had it 4 years ago it seemed like a slam dunk...this neuro stuff is all very new and very scary. Like I said mynurse friend says I should screen out MS first.
Thanks so much for any further info LocalMan
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
posted
I had a lumbar puncture done during what was probably stage 1/stage 2 of my undiagnosed Lyme Disease...it did not reveal Lyme or MS or an infection. It wasn't as painful as the intractable migraine I was having but maybe that was the 6mg of IV Dilaudid helping. But, again, it did not detect the Lyme disease so I don't think it is helpful for that indication.
It's not useful in Lyme detection but around 80% of MS patients are positive for OGG bands.
I had (-) MRIs and (-) EMGs, too. Now, it is very obvious that I have Neuro Lyme. Posts: 69 | From Wisconsin | Registered: Apr 2007
| IP: Logged |
There are no definitive tests for multiple sclerosis unfortunately. It's almost a diagnosis one gets when everything else is ruled out.
Oligoclonal bands (over represented proteins in the CSF) are something they look at when diagnosing MS, but these bands can also be produced by Lyme disease as well. This is why it's so difficult to diagnosis either one of these diseases.
Myelin basic protein is another thing that can be present in both MS and Lyme. Same thing goes for lesions or plaques in the brain and spinal cord.
Also, there are some studies that show a link between MS and Lyme. In other words, MS may be caused by Borrelia burgdorferi.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
| IP: Logged |
posted
Velveteen girl -- thanks so much for gathering all those references in one spot. Hubby's first spinal tap used the index method you referenced -- his result was .96 (1.0 would have been positive).
We knew next to zero about Lyme at the time. Was at least 6 months later before got a positive Lyme PCR test. No treatment for another year after that.
2nd 2 spinal taps negative as well. One did show elevated protein though. No question that hubby has neuroborelliosis -- spinal tap is just not a very reliable test.
Hubby does have white matter lesions -- think about 50% of neuro Lyme patients do.
Hubby had elevated antibodies to myelin in his bloodstream -- supposedly normal in CSF though.
Hubby has seen 16 or maybe 18 neuros -- I forget now. Only 1 was Lyme literate. Only 1 or 2 of the others thought his tremors/myoclonus/seizure-like episodes were real and they had no explantion for the cause.
My advice is skip the neuros and find an LLMD.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Localman
I have neuro lyme. Have had it 20 years. My last relaspe it got so bad I was almost catatonic. Had an MRI with dye at that time & it was completely normal. An MRI does not rule out neuro lyme & doesn't always show white lesions.
The spinal taps are at best 20% accuate. Very low yeild & inaccurate.
Have you seen a lyme literate doctor to rule out lyme?
With treatment I got so much better. Not cured but much better.
Anyway good luck & hope you can feel better soon Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
bettyg
Unregistered
posted
thanks for the good links on lumbar puncture; i added them to my newbie's package info i send out!
would you copy this thread link to TREEPATROL'S NEWBIE LINKS in medical at top, and paste asking him to add IF he doesn't have already! good info here. thanks.
i lost my address link and still don't have it back or i'd copy myse lf!
IP: Logged |
Good reading above for you regarding Spinal Taps to rule in or out Lyme or MS....I suggest NOT getting a spinal. I would suggest finding a lyme doctor.
Lyme and MS are both clinically diagnosed. There isn't A test to absolutley confirm either..
I have a MS diagnosis, and after many many years finally went to a lyme literate doctor, got an IgeneX test, CD57 and other blood tests and was clinically diagnosed with Lyme.
Here's a great source of information based on research being done between these diseases.. you can give to your neurologist.
Dr. Steven Phillips: "Chronic Lyme Disease: Connection to MS- Facts behind the controversy" This lecture was recorded at the Lyme Symposium held at the University of New Haven on May 12, 2006. The symposium was organized by Dr. Eva Sapi and her Lyme Research Group at the University of New Haven.
77 minute DVD $15 Please send a check or money order payable to University of New Haven (with your address) to:
Eva Sapi Ph.D. University of New Haven Department of Biology and Environmental Sciences Cellular and Molecular Biology Graduate Program 300 Boston Post Road, Dodds Hall 314 West Haven, Connecticut 06516
Personally, I feel that I am now treating the cause of my MS and not just treating the symptoms,,with a "disease modifying drug".
the best to you, tory
Posts: 158 | From PA | Registered: Oct 2006
| IP: Logged |
posted
Wow this is a lot of info..thanks so much for everything so far. The difference between neuro lyme and MS appears to be fuzzy...and I have done no research on MS, mainly out of fear and fact I really feel like I'm having a lyme relapse, just diff symptoms. The aches and eyes and general feeling are similar to 4 years ago, but the nerve stuff is new and completely freaking me out. I am taking Neurontin (1st dose last night) for the nerve pain stuff, emotion and anxiety are making me shake right now...I hope. Thanks and hope LocalMan
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I have been in the same boat as you.
I have Lyme disease no question, but the neuro gave me an MS diagnosis too. IMO, an LP will not confirm or exclude anything.
I saw my opthamologist yesterday. I have not seen him since 2000 and he urged me to get to another neuro who can think out of the box and hopefully get me on my feet faster. We talked about the horrible treatment I received at the hands of an alleged LLMD who put me in this wheelchair.
I take what all doctors say with a lot of sand. I am at the point where I don't trust any of them, even the alleged LLMDs.
Good luck.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
posted
My recent lumbar was negative for both MS and lyme. The bands for ms can show up whether ms or lyme. The chance of getting a pos for lyme from CSF PCR is about 3%. (slim to none) So now my neuro will not treat me with abx for lyme and I am back at square one with docs. Hope you get the results you seek. And it is good you no longer take the prednisone! I also didn't know any better at the time...see my other post about latent lyme trigger. Good luck, Laura
Posts: 8 | From AZ | Registered: May 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Roll Eyes]](rolleyes.gif)
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
lf!
Printer-friendly view of this topic