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Did you ever get tested for Lyme as well?

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    #1

    Did you ever get tested for Lyme as well?

    I was bitten back in 2015. I got the big old bull's eye rash. I had the swollen lymph nodes. My doctor did nothing about it at the time.

    I had ON in 2013 (so, previous to being bitten by the tick). It was considered my CIS.

    Anyway, since they found lesions on MRI I also requested a Lyme Test. My thoughts are that I don't want it to be labelled MS when it might be Lyme OR, be co-infected and fighting off MS lesions only to be getting Lyme lesions as well. In short, what if I have both?

    Anyway, has anyone else here been tested for Lyme and what were the results?

    I just got back the results from Public Health and they are negative but it is well-know there is a 50% false negative rate. I am now sending off a sample to a lab in Germany that tests for more than our Public Health test and has a 95% accuracy rate.
    "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
    ~Leonard Cohen

    DX March, 2022. Ontario, Canada
    Tags: None
    #2
    Yeah; I got tested for so many things that I can't remember everything. First, at a hospital about 30 miles away. I was first in the ER and then admitted for a few days. Then, a few months later, I went to Mayo Clinic in Rochester at my doctor's suggestion because I was so sick and still undiagnosed. I was at Mayo for two weeks, tested for multiple things every day.

    Yeah; MS is difficult to dx and can easily be mistaken for other things. And, other things can be mistaken for MS. Mayo Clinic was unable to dx me. They didn't rule out MS, but thought it was likely Central Nervous System Lupus. It took over a year following my Mayo Clinic visit before my neuro, was finally, as symptoms and MRI results kept changing over time, that he finally dx me with MS.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08    .
    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    Comment

      #3
      Originally posted by Pistachio View Post
      I was bitten back in 2015. I got the big old bull's eye rash. I had the swollen lymph nodes. My doctor did nothing about it at the time.
      Pistachio ~

      Did you receive the antibiotic treatment?

      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment

        #4
        Yes, ruled out as part of the diagnosis process.

        Curious on which tests you are referring to and where the accuracy stats came from. They are quite concerning.

        My understanding is that the blood tests in the USA, in the first weeks after infection, the test can produce false negatives. After that, it is more accurate and since your body can produce antibodies to it for years, can be detected for years, even after your body clears it. If positive years later, then a spinal tap can be performed to look for active Lyme serum.
        Last edited by pennstater; 12-07-2020, 05:03 PM.
        Kathy
        DX 01/06, currently on Tysabri

        Comment

          #5
          Originally posted by KoKo View Post

          Pistachio ~

          Did you receive the antibiotic treatment?
          Nope! Literally nothing was done. In Canada Lyme is not taken very seriously. You would be hard-pressed to find a Lyme-literate doctor here.
          "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
          ~Leonard Cohen

          DX March, 2022. Ontario, Canada

          Comment

            #6
            Originally posted by pennstater View Post
            Yes, ruled out as part of the diagnosis process.

            Curious on which tests you are referring to and where the accuracy stats came from. They are quit
            I'm referring to the ELISA test.
            "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
            ~Leonard Cohen

            DX March, 2022. Ontario, Canada

            Comment

              #7
              Hi Pistachio.

              I had a boatload of testing done during the diagnostic process but the test for Lyme Disease was never one of them. To the best of my memory Lyme Disease wasn't even a consideration by my Neurologist. Best wishes.
              Diagnosed 1984
              “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

              Comment

                #8
                Update by the OP....

                So, I had my blood drawn and sent to a lab in Germany that is run by one of the world's leading Lyme experts. The results? Positive! And, he gave me a consult (my husband is a chiropractor and had a back and forth email convo with him). This German doctor gave me the protocol for treatment to take to my MD.

                Well, this complicates things. I had ON as my CIS in 2013. MRI confirmed MS in 2020. I was bitten by the tick in 2015. Now I wonder if I have both? What a complicated mess this is!
                "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
                ~Leonard Cohen

                DX March, 2022. Ontario, Canada

                Comment

                  #9
                  Definitely is a complicated mess. It is possible your neuro may take a wait and see approach and monitor MRIs for any future changes. Let us know how your conversation goes!
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment

                    #10
                    Originally posted by Pistachio View Post
                    Update by the OP....

                    So, I had my blood drawn and sent to a lab in Germany that is run by one of the world's leading Lyme experts. The results? Positive! And, he gave me a consult (my husband is a chiropractor and had a back and forth email convo with him). This German doctor gave me the protocol for treatment to take to my MD.

                    Well, this complicates things. I had ON as my CIS in 2013. MRI confirmed MS in 2020. I was bitten by the tick in 2015. Now I wonder if I have both? What a complicated mess this is!
                    Thanks for the update, Pistachio.

                    It's going to be an interesting MD appointment, as well as your neuro appointment, to say the least.

                    Good luck with the treatment protocol. It would certainly be fantastic if it alleviates your symptoms.

                    Please keep us posted. Thank you!





                    PPMS for 26 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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