tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
So I went to my Neuro yesterday and she said there' a chance I have MS on top of Lyme. She doesn't doubt my Lyme dx and agrees w/it but all along she's been saying that "something else" may also be going on.
I had a spinal tap several mos. ago and it showed a lot of "O" bands, I believe 10 when less than 4 is normal. She said that she had done many spinal taps on Lymies and I'm the only one that had these results. She did admit though that even though she hasn't seen those spinal tap results in Lymies that it has been reported. I also have a lesion on my rt frontal lobe that showed up in MRI.
But, she also said that it's now believed that Lyme can lead to MS in some people. So now I'm freaked out but she said all we can do is just follow my progress w/Lyme treatment and go from there and if need be, at some point we may consider some MS meds (not steroids).
I think the symptoms that she thinks sound like MS in me are occasional loss of control in my arm/hand and leg/foot. I've had this several times on my right side but about a month ago it happened on my left (one time) for the first time after treating Lyme for a yr. I also have some stuff going on on the right side of my face, especially w/my rt eye and ear.
So I'm wondering if anyone else has had symptoms and spinal tap results like mine and if they've been told possible MS and what was the outcome? Thanks for any info you can share!
Posts: 2541 | From Northeast | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Have you talked with your LLMD about this?
With treatment, if lyme or other chronic stealth infections are present, many patients who had a dx of MS have seen marked improvement.
Sorry - I've stayed too long at computer and my eyes are wigging out. I can't speak to the specifics of your note but you may want to read the article below. The author does make some distinctions between misdiagnosed MS that is really lyme, and lyme and MS.
Whatever the case, though, addressing the infections are key. Even brain lesions have been known resolve with treatment.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
posted
Lyme treatment for a year especially for neuro symptoms is really a very short time. 3- 5 yrs is more like it.
Let's clear up a few things and quiet a few fears, shall we......
1. O-bands occur is neuroborreliosis-just because your neuro hasn't seen any does not mean it doesn't happen--so she and you are correct 2. Lesions occur in lyme. 3. New symptoms can appear while treating lyme. 4. Let's be clear, UNTREATED or UNDERTREATED lyme can lead to an MS LIKE illness in some people.
The symptoms you describe sound very consistent with neuroborreliosis so do not sweat that at all.
My husband (and sister) are dx'd with MS. If we had stopped treatment at yr one I don't know where we'd be. That was literally the beginning.
My husband is now getting better and better after almost three years of tx. Currently about 80-85% better, but he had some very low points where new symptoms occurred.
Stick with your abx treatment, make sure you cover all your bases(coinfections) and try (although I know it's hard) to not get too scared.
I think it's great you have a somewhat literate neuro, but stop listening when she goes into standard autoimmune neuro mode. That's bad JUJU and can test your resolve....Besides, honestly, the MS meds really aren't better than placebo anyway and worse yet some can kill.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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lymeloco
Unregistered
posted
What the hell does he really know???????????????????
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lymeloco
Unregistered
posted
I have been to many neurologist's in Boston and all that I've gotten is rudeness!
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Thank you ALL so much for replying! I do feel a little more relaxed about this now. About what was said about Lyme bringing about an MS-like illness, is that illness permanent or does it resolve w/successful Lyme treatment?
I also went to a Neuro in Boston before getting dx w/Lyme but after getting dx w/POTS. He was supposed to be a POTS specialist. When I also told him about the numbness and loss of control I was getting he said I was probably just sitting the wrong way! Can you believe that BS?!!!
At one point after getting dx w/Lyme I had to speak w/this dr. over the phone about something and I told him my dx. His response was "did you test positive?". I said "no, but I have it". All he said was that I'll probably feel better soon then if the dx is right. What a loser!
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Is it just me or does it seem like the only ones who recover well from Lyme are doctors??????????
Another reason doctors can't be trusted to:
A. DIAGNOSE LYME AND ITS COUSINS
B. CURE IT.
C. OR EVEN FIGURE OUT HOW TO TREAT IT.
-------------------- Hope I'm not a hypochondriac Posts: 11 | From virginia | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You asked:
" . . .About what was said about Lyme bringing about an MS-like illness, is that illness permanent or does it resolve w/successful Lyme treatment? "
Yes. For many who were misdiagnosed with MS or ALS when it was actually lyme or other TBD, it has improved to varying degrees. Some have recovered quite well.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Amen. It's amazing the guru Dr. B cures his Lyme with mono Ceftin therapy. Give me a break! He's throwing everything but the kitchen sink at other patients and can't put a dent in the illness on the Mystery Diagnosis episode. Something smells wrong to me.
All these LLMDs who had or have Lyme look pretty functional. I can barely do any lawn work outside. I'll feel like I'm on death's door one day. They are running s stressful medical practive 5 days+ per week. I just don't buy it all. I'm sorry.
When someone is truly sick, they are sick. It's apprent by their mannerisms, energy, attitude, etc. No sick person can function at high capacity no matter what level of determination they have. It's unachievable.
quote:Originally posted by zennia: Is it just me or does it seem like the only ones who recover well from Lyme are doctors??????????
Another reason doctors can't be trusted to:
A. DIAGNOSE LYME AND ITS COUSINS
B. CURE IT.
C. OR EVEN FIGURE OUT HOW TO TREAT IT.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I was also told that I might have MS along with Lyme at my last LLMD appointment in Sept.
I have the opposite "MS" issues, numerous brain lesions (13) but only one O-band. My LLMD told me that he doesn't usually see people w/o-banding. I should have asked him how many of his patients even get a spinal tap??
I have mostly left sided issues (more brain lesions on right side w/a cluster of 3 or 4 close together in one spot). I have gone numb or had paresthesias (vibration, dripping, burning feelings) all over my left side. I have never lost function, but one day I did wake up completely numb on the left side and then started developing spasticity on the left side only (very weird).
I WISH I had a neuro that would even consider the two diseases together. I am surprised that a neuro actually told you that it is now believed that lyme can cause MS. This has been my fear all along. NO doctors in my state will even consider lyme, so I have to go out of state for treatment.
Of course we know that lyme can cause the lesions and o-banding, but when you have specialists telling you that you could have both diseases it is sobering. I know how you feel. I keep telling myself that all I can do is treat myself for the lyme and hope for the best. I caught it as fast as I could and I have seen a lot of improvement with treatment.
I really wish they would study people like us. It is just so important for early diagnosis!!!!! I don't want others to have to go through all of this, stuck in a situation that doctors really don't know a lot about and just having to "hope" for the best.
For many of us, doctors won't even consider a lyme diagnosis. I would bet that a large percentage of people in my state that are diagnosed with MS, have lyme as an underlying illness. I am sure that they could benefit from abx treatment.
Are you going to get repeat MRI's and LP's? If I go back to my neuro, I would have to lie and act like I don't have lyme disease to get an MRI. I am curious if abx treatment has healed any of my brain lesions.
FYI--I have recently started using heparin troches and that has helped with some of the numbness. I had a mix up with the pharmacy and ran out for a few days and really felt BAD!!
Be sure and post updates because I would be very interested in what happens with you.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Hi Stacey,
My Neuro was VERY careful in choosing her words when we were discussing Lyme and MS. When she told me there's a chance I have MS in addition to Lyme, I told her that I read Lyme can possibly cause MS.
She told me that I wouldn't find that in any respectable medical journal. So I said, well than what are the chances that I would coincidentally develop both Lyme and MS?
That is when she admitted that she herself believed that it could happen.
Then I asked her if I did have MS as well, is there a chance that it could get better and go away w/Lyme treatment or if I would have it for life, and she said that if I also had MS, that I would probably have it for life and it would come and go.
I don't think anyone really knows for sure. I go back in January at which point we will probably be doing another MRI and probably my first SPECT scan (at my request). I will let you know how that goes. I asked her if another spinal tap would provide any more info but then I didn't really let her answer b/c I said I never want to do that again unless it would provide some useful info that would change my course of treatment or something.
Posts: 2541 | From Northeast | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Another spinal tap is not likely to help. Please see a neurologist who is expertly Lyme Literate.
What does your LLMD say about all this?
This Goldings article above discusses in detail, lyme misdiagnosed as MS, MS - and lyme and MS, together. The distinctions are well explained,
However, as with the ALS article, also above, it becomes clear that what one neurologist gives you as a sentence can disappear with the right treatment -or maybe a change in your current treatment.
Unless your neurologist has treated hundreds - or thousands of patients - you might want to find one who has. I give her points for recognizing lyme and honoring its effects as something to be reckoned with - but I think she is jumping ship.
You need someone who believes it is possible to get better and go the extra mile to find out how to do that.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Thanks Keebler! I will definitely check that out when I have some time to sit down and read it.
Posts: 2541 | From Northeast | Registered: Jan 2008
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