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Question For Those With Lyme

DingoGirl

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DingoGirl Enthusiast
DingoGirl
Posted

Hi everyone,

I have a friend of a friend who's fought a long battle with MS, but I suspect he may have Lyme.

As I recall from my reading here over the years, there is only one lab that can accurately test all the bands for Lyme and etc.

Can anyone give me quickly the name of that lab?

Thanks so much. :)

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nikki-uk Enthusiast
nikki-uk
Posted
Hi everyone,

I have a friend of a friend who's fought a long battle with MS, but I suspect he may have Lyme.

As I recall from my reading here over the years, there is only one lab that can accurately test all the bands for Lyme and etc.

Can anyone give me quickly the name of that lab?

Thanks so much. :)

Pretty sure it was Igenex

Open Original Shared Link

I'm sure one of the Lymies will verify.....

DingoGirl Enthusiast
DingoGirl
Posted
  • Author
Pretty sure it was Igenex

Open Original Shared Link

I'm sure one of the Lymies will verify.....

that's IT! and the Brit gets it right!!

thanks, Nik :)

  • 3 weeks later...
still tiredofdoctors Rookie
still tiredofdoctors
Posted

Susie,

IgeneX caught all four of my tick diseases: Lyme, Babesia, Bartonella and Erlichia.

Oddly, my veterinarian told the MD's YEARS ago that I needed to have the type of testing that they do -- he mentioned specifically the Erlichia because of the way I was walking.

Please tell your friend that it is important to use a laboratory such as IgeneX because of the dual-testing protocol they have. In the very beginning, I was (reluctantly) given a generic "is there any Lyme in the blood" test which returned a false negative -- which will up until two years after initial disease contraction.

You know my history . . . which so STRONGLY mimicked MS. Best of luck to your friend.

Lynnie

Jestgar Rising Star
Jestgar
Posted
Oddly, my veterinarian told the MD's YEARS ago that I needed to have the type of testing that they do -- he mentioned specifically the Erlichia because of the way I was walking.

Lynne, how could he tell? What about your walking tipped him off?

Judyin Philly Enthusiast
Judyin Philly
Posted
Lynne, how could he tell? What about your walking tipped him off?

Great question Jess? I'd love to know too

Lynne, i didn't know you had lyme? When in the heck did you get that dx?

Judy

still tiredofdoctors Rookie
still tiredofdoctors
Posted

Honest to goodness, I don't KNOW how he knew by my walking! I forgot to ask him! I was to the point of using the walker - not in the wheelchair yet - and while, yes, I definitely had a typical "widened" cerebellar gait, I did have some unusual characteristics to it. My doctor and I once joked that it was a cross between "Herman Munster" and a "Royal Lippizon Stallion"! Maybe that was it . . .

I was finally diagnosed when I saw Mtndog's doctor in NYC in December. He said just recently that had I not seen him when I did, I probably would not have seen this last birthday in March. I was having seizures 3-5 times per day, each lasting 20 minutes. He said eventually my heart would have stopped during one of them. Scary stuff, huh?

Because I seroconverted to the neurogenic Celiac (because of the Lyme), I'll always have to be gluten-free. There's no getting around that. He has discussed that with me, also. We have toxic mold in our house and are living with my mother until we can get SOMETHING figured out with regard to the house (it has to be burned to the ground), but the mycotoxicosis I developed (again because the Lyme took away my ability to fight it) is what caused the white spots on the gray matter of my brain.

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