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How many people have been diagnosed with MS
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How many people have been diagnosed with MS

I'm just curious how many people have been diagnosed with MS before their Lyme diagnoses. I was just diagnosed with MS and is trying to get diagnosed with (or not) with Lyme. I feel I relate to Lyme due to some symptoms I'm having and had for a couple years, not realizing it could be Lyme since I don't remember being bit. I am from Long Island it's not out of the question. Lyme is really bad there. I'm having extreme anxiety and panic attacks for no reason. I never had one in my life until 1 1/2. Now Ive been researching like crazy and came across the misdiagnosed of MS when it's really Lyme and the symptoms of Lyme, I feel like I relate more to Lyme. Wondering if I'm going crazy or just in denial? Thanks!
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1763947_tn?1334058919
As most people know on here, I was living in TX where "Lyme doesn't exist" and I was misdiagnosed with MS. I have a nurse friend in VA, who works for her LLMD. She told me MS equals Lyme in most cases.
Hang in there!
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I would definitely consult a Lyme specialist for a work up -- many docs are not familiar with Lyme, so they don't include it in their differential diagnosis.  The tricky bit is that MS and Lyme can have symptom sets that overlap a lot.

The downside of the situation is that docs often have a blind spot when it comes to Lyme, so finding a Lyme-aware doc is critically important.  The docs who would (in a normal world) be logical choices to diagnose and treat Lyme are infectious disease docs, neurologists and rheumatologists .... but sadly, these three groups are among those most *resistant* to taking Lyme seriously.  The medical profession is in a real mess over this, and until they get themselves sorted out, we patients have to help each other find a way to a Lyme-wise doc.

What percentage of MS diagnoses are really Lyme is not known yet ... someday we may have statistics on that point, but we don't yet.  We can help you figure out how to find a Lyme-wise doc if you'd like.  Let us know.
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I was told I "probably" had MS.  My neuro couldn't think of anything else that could cause my brain lesions and MS-like symptoms. But since he wasn't sure, I spent hours googling for other possibilities. (He never thought of Lyme. I came across it in my research and asked him to test me for it. I tested negative.)

I did get the full workup from an MS specialist at a nearby university hospital. She was very kind and thorough. She doubted I had Lyme, but withheld judgement.

Because the behavior of my symptoms didn't fit MS, I had normal evoked potential vision tests, none of my brain lesions were enhanced, and I also had non-MS symptoms, she concluded I did not have MS. But she also wanted to see me in a year, just in case I did develop it. I hope to show her I am well at that point!

Many people whose Lyme mimics MS turn out to have a second tick borne infection called Bartonella. It is called b.henselae (the bacteria name) on the lab tests. I tested positive for both at IgeneX. It also causes anxiety.  

I had anxiety, too, which I'd never had before. Most doctors see it as a psychological reaction to being sick, but in the case of Lyme (and Bartonella), it is actually a symptom. I also started obsessing over some things, mostly my symptoms! The odd thing was that I didn't realize I was obsessing.

There are some good articles out there about Lyme mimicking MS. If you haven't already, try googling "Lyme misdiagnosed as MS" and see what you find. There is one on the Columbia U website that compares how some test results will vary between the two diseases.

I am glad you are here! We are happy to help you explore the possibility of Lyme.  We know what it is like to want the RIGHT answer.
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wow feel like I could relate to so much what you said. I can't wait to get answers!! I have an appointmnet with a Lyme disease specialist because of this site. The anexity attacks are like nothing I have ever felt in my life. It's really scary. Right now I'm dealing with it with Lexapro but I'm not 100% at all. Will they go away with treatment? I have always been a natual happy person, and I knew something was wrong with me when it woke me up from a deep sleep with nothing triggering it. I feel like everything is adding up, maybe a little hopefull. I'm trying not to get my hopes up because I could not even have it, but it will explain the way I'm feeling the last 2 years. I can't imgaine it not being Lyme!!
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Good for you for taking action to get an appointment and pursue the possibilities!  I remember well what it was like to be wandering around so sick, with a lot of bewildered or just downright unhelpful docs shrugging their shoulders at me.

Do let us know how your appointment goes and what the doc says and what tests he/she orders -- not all LLMDs are created equal, because it's a developing area of medicine -- and the standards for appropriate testing and care are somewhat in flux.  We'll be happy to weigh in with our own experiences compared to your appointment, so you can decide whether you got a winner on your hands.

Progress!  Hurrah!!  Keep us posted!
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and PS ... be sure you do not have Lyme before any doc talks you into taking steroids, which is what likely would be given for MS.  

Steroids suppress the immune system, which may be appropriate in MS, but is exactly the opposite of what is needed in a bacterial infection like Lyme.
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Is the Lyme specialist you are seeing an Infectious Disease doctor?  If so, be warned that they are unfortunately the worst about Lyme Disease. They have a very narrow and close minded approach to it. If you don't test CDC positive, they will dismiss you completely. Even if you do, they will only treat you for a month, regardless of whether you are still sick.  Their organization, the IDSA, is the group that most Lyme advocacy groups are fighting against as they routinely deny diagnoses and care to late stage Lyme patients.

The conflict over Lyme is a long, sordid story.  The type of Lyme specialist who is willing to make a clinical diagnosis and treat you until you are well is an ILADS affiliated doctor that we call an LLMD. It isn't an official designation, just shorthand for doctors who see Lyme for what it really is.  

If your appointment is with an ID doc, be prepared for possible resistance if not outright dismissal.  When I was in the hospital for severe abdominal pain, I told them I was sure I had Lyme. The ID doc wouldn't even come see me because I had already tested negative.  The Hospitalist wouldn't even discuss it with me and told me I had wasted my money on the IGeneX tests I submitted hours before I went into the ER. They discharged me with a bottle of Vicoden and a shrug.  

I went to see my LLMD 10 days later. A week later, my IgeneX Western blot came back IgM positive, along ith the Bartonella antibody test. If I had believed the doctors in my very reputable hospital, I would still be severely ill.
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I experienced the same thing at my recent hospital stay. The hospitalist didn't believe in Lyme and he wanted me to have an ID doc come and see me, I told him I didn't want to see an ID doc but hospitalist insisted however the ID doc never showed which was interesting.
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I agree with these comments from Rico and Mojo.

But I would consider going through with the consultation just so you have the test results in hand and can decide what to do next.  That doesn't mean you necessarily agree with the tests given or the results from them, but it's a place to start, and ALWAYS get hard copy of your test results and KEEP your own set of them.  They can be very useful to a future doc.

We all go through some version of this, so you are not alone.  Let us know if you have any questions -- take care!  J.
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4205163_tn?1354293660
It's a doctor that Mojo recommended. So assuming she is?
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I'm actually driving 3 hours to a doctor that mojo recommended. I finally feel hope that I will get the answers I need to move forward with Lyme or ms! Thank you everyone for your advise, I had no one to help me! People told me to stay off the Internet but I'm glad I didn't listen :)
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4205163_tn?1354293660
I'm actually driving 3 hours to a doctor that mojo recommended. I finally feel hope that I will get the answers I need to move forward with Lyme or ms! Thank you everyone for your advise, I had no one to help me! People told me to stay off the Internet but I'm glad I didn't listen :)
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She is going to my LLMD and will be in good hands. My doc can tell her yes its Lyme or yes it's MS. She will get answers.
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Excellent!  Fingers crossed here (X) !
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