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Need advice

Hi everyone, I'm in the process of trying to figure out what is wrong with me. I was recently diagnosed with MS. I also being tested for Lyme. I had non responsive lesions on my brain and spine. I feel like I relate more to Lyme disease, mostly because of sudden out of the blue anxiety attacks. I had an appointment with my neuro this morning to get results from an LP. He said my antibodies came back elevated which is consistant with MS. Is that how it would read for Lyme? or is it the opposite? Thanks for your input!
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Which antibodies were elevated? WIth Lyme, you get specific antibodies elevated so you need the specific Lyme Western blot. You'd need a test by a reliable lab, most here consider Igenex the best in the US.
The anxiety attacks could be Lyme or also a lyme co-infection called Bartnella, so I would be tested  for that too if I were you.

I don't know enough about MS to make a useful comparison of which illness is most likely based on what you've said, all I can say is I would definitely get tested if there is any doubt in your mind. You would certainly not be the first person with Lyme disease to get misdiagnosed with MS.  
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1763947_tn?1334058919
Hi, I was misdiagnosed with MS among other things.
As youvegottobekidding said above getting tested at igeneX is the way to go. You could have Lyme, as I did, which mimics MS. I also have Bartonella and Babesia.
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4205163_tn?1354293660
Yes, I went last week to a doc and got tested for all those coinfections from Igenex. I won't know anything for another week or two. I believe the antibodies where IGG??? I could totally be wrong!! I have no idea what he tested for to be honest! This is all new to me also so I don't much about it.
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1763947_tn?1334058919
IGG is correct.

I would go to igeneX web site and read up and go to Lyme association and read Burascano's treatment guidelines. Its called ILADS dot org.

You should email them for a Lyme doc, LLMD referral near where you live.

The LLMD can tell you if you have MS or Lyme. Mine told me.

We are here to support you.

  
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4205163_tn?1354293660
I did go last wek to a LLMD, she didn't really say whether or not i have Lyme or Ms, she was very neutral. She did my blood work and hopefully I will find out something.
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Avatar_f_tn
Sounds like you are doing the right things, and your LLMD was right to wait till she sees the tests -- tho the tests are sometimes unclear as well.  An LLMD knows that and will not ignore your symptoms, which are the important thing.

Neuros are trained to look for MS but not for Lyme, so I'm not surprised with that outcome.  

Are you taking magnesium supplements?  That can help with the anxiety sometimes.  Any variety ending in "-ate", like magnesium malate, orotate, citrate, etc.  (The combo called CalMag [calcium + magnesium] is made with magnesium oxide and is NOT very helpful, from what I read.)

Or try a nice warm bath with Epsom salts .... it is magnesium and is absorbed through the skin.  Very soothing.

Hang on!  You're doing what I would do, pursuing the possibilities.  Keep us posted --
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4205163_tn?1354293660
thank you!! The doctor I saw last week started me on several supplements, and magnesium is one of them. My neuro seemed very disappointment in me that I went to see another doctor, a holistic doctor at that!! Oh well, I have to do what I think is right, and my gut is telling me to be 100% sure its not Lyme. I'm from Long Island so it's no uncommon. Of course when he said my antibodies were elevated which is consistant with MS that he feels it's not Lyme, so maybe my gut is wrong???
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Avatar_f_tn
I don't know which 'antibodies' might be elevated, so until you've heard back from the Lyme doc, try not to worry.  Neuros seem to have a big blind spot when it comes to Lyme ... it's not just that they think it's rare and hard to get etc., but they simply do not recognize the possibility of a Lyme infection and sometimes just refuse to put it into the differential diagnosis (Lyme vs MS).  

I suspect there is a fair amount of misdiagnosis mistaking Lyme as MS, because some of the Lyme symptoms are a bit like MS symptoms sometimes ... but these docs are also not sensitized to watch for other symptoms that are not consistent with MS and could point to Lyme .... because the docs just don't have Lyme on their radar screen.  

Does that make sense?  It would be like someone who has only ever had lasagna and no other kind of Italian food, so if he is served ANYthing with pasta and tomato sauce, he will call it 'lasagna' even if it's really spaghetti and meatballs --- and since he doesn't know what meatballs are, he just ignores them.  Likewise, a nonLLMD might focus on the symptoms that fit with his experience of MS and simply ignore the symptoms that don't match with MS --- those extra, seemingly irrelevant symptoms are the 'meatballs', and the doc still calls it 'lasagna'!

Hang in there -- sounds like you are making all the moves I would too.  Keep us posted on how you're doing --

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1763947_tn?1334058919
Jackie is right. I had the brain lesions and that is why they jumped to MS. My LLMD is wholistic too so we do mainstream abx as well as supplements and other wholistic things.
A Lyme doc can usually look at your MRI and tell if it is MS or Lyme but from doing tests for sure.
You are on the right track!
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Avatar_f_tn
Hi.  Sorry to hear you are still struggling for clarity.  It is a good thing you got tested at aiGeneX.  Hopefully it will show signs of Lyme if you do indeed have it.  Have you taken steroids or other immune suppressing drugs?  If so, that can interfere with your antibody production, making it more likely to test false negative on an antibody test.

I had a full workup for MS, but I am not sure which antibodies your neuro is referring to.  A general immune system test (IgM and IgG levels) are just that, general indicators.  Neither positive nor negative are definitive for anything other than whether or not your general immune system is working overtime or not. With Lyme, it can be either.  Mine were suppressed, and my IgM and IgG levels were on the low end of normal, even as I was descending into a serious Lyme infection.

You might want to google "Lyme misdiagnosed as MS" and see what you find.  There are several articles out there comparing and contrasting the two conditions. Lymeinfo.net has a page with a list of links to articles. There is also an article on the Columbia University Lyme group website that mentions some test results that are more likely to be high or low or +\- in each.

It is surprising to me how much overlap there is.  But what is frightening, is that the treatment for MS is usually devastating for a Lyme patient.  Unnecessary antibiotics are unlikely to harm an MS patient, but won't do them any good either.

Neurologists are taught to discount Lyme and to strictly follow negative test results (they only hear about false positives, not false negatives).  Three different neuros I saw didn't believe I had Lyme, even as they said I probably didn't have MS either (not enough signs of it).  They were sure I had a mysterious neurological condition, they just couldn't figure out what it was.

Hopefully you'll get answers soon with your upcoming test results.  Keep us posted!
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Avatar_f_tn
Well said, Rico.
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4205163_tn?1354293660
I brought my MRI scan and she didn't look at it. I wonder what her opinion would've been. My neuro even said theyre are old lesions, they are greyish and he doesn't how long they have been there for.
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Avatar_f_tn
IDK why some docs get annoyed when you go seek another opinion.happened to me 2x this past 6 months. like i hurt their feelings and now am a traitor.!
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I am surprised she didn't even look at your MRI, although my GP didn't either. She just wanted the radiology report.  All my neuros did look at it, though.

Mine are supposedly "old" too, as they are not enhanced.  But that is an assumption based on an MS paradigm that active or new lesions are enhanced.  For all anybody knows, one of them appeared the day before the MRI.
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