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Lyme Disease Message Board

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Hi Jenbeth28. :wave:

You do take great notes! When I try to think of when I was first bit or when my rash first appeared, I think "Duh ...... I dunno."

Your records are amazing.

I saw many different doctors and had a few misdiagnoses' along the way. I saw an infectious disease doctor, who looked at my rash and laughed and told me to get out of her office. I saw a neurologist who said I had dementia (ha! that one is my peronal fav). I was told I had ear infections; I was told I never had an ear infection; I was told I had brain tumors; I was told I had multiple sclerosis.

It was harrowing, scary and exhausting going from doctor to doctor in my quest for a diagnosis and treatment.

I'm sorry you're so sick and in so much pain. It stinks! I know.

If you want to rule out Lyme, I would recommend seeing an LLMD (Lyme Literate Medical Doctor) and have your blood sent to Igenex labs in Palo Alto California for Western Blot testing for Lyme and also for co-infections.

Lucky us ... we get bitten by ticks that have more than one bacteria. Ewww!!

I have vision trouble from Lyme, called oscillopsia. What happens to me is that everything I see moves with the motion of my head. It's like watching an old home movie when the motion control was turned off. Everything jiggles and shakes in time with the movement of my head.

Even if I sit very very still, I can see my field of vision move in time to my heart beat.

I found out about the oscillopsia before my Lyme diagnosis. Out of frustration, I went to Univ. of Penn. for a full day of balance testing. At the end of it all, the doctor sat across from me and simply said "Your balance mechanisms are completely broken".

My only response to that was "Duh!!!" Tell me something I don't know.

Shortly after, I tested negative for Lyme 3 times by local labs here in New Jersey.

Then I saw an LLMD and she sent my blood to Igenex and I tested CDC positive through Western Blot. CDC positive means I satisfy the Center for Disease Control definition of a Lyme infection. Western Blot is just the name of the test.

There's a thread at the top of these boards that lists good LLMD's around the country and then some.

I hope you find a doctor who tie it all together and give you a solid diagnosis and more importantly, treatment and some relief.

Please try to find an LLMD and get tested. Even if it's negative, at least you've ruled out Lyme and it's co-infections.

Hang in there. Feel free to post anytime you need to. We're always open - day & night. :)

Peace and health to you,

p.s. A good LLMD will treat you based on symptoms, not a blood test. Bear this in mind.

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