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Babesia testing help

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Posted 11/22/2016 2:37 PM (GMT -5)
So I'm going to two infectious disease specialists within the next month. I've run out of doctors to see on insurance and I'm limited by what my parents will agree to. (Much to my aggravation, they don't listen to me about anything.) despite having a positive FISH for Babesia from IGenex the docs apparently want me to get a antibody test while I'm on Mepron. If it's negative I don't have Babesia.
I don't understand why they would rely on such a test that is notoriously unreliable! No one will listen to me and I've had such bad experiences with ID doctors in the past I'm pretty nervous right now. :/ I really don't know what to do.
Posted 11/22/2016 2:43 PM (GMT -5)
I have read that a positive FISH is a positive...no questioning.

From Igenex website:

FISH Assay Sensitivity - 100%; Specificity >98%

Looks like they are looking for a negative - will believe a negative...but not a positive...that angers me

I'm sorry you are facing this...


Are you not seeing a LLMD? that is who you need to see...and take your parents with you.
Posted 11/22/2016 2:45 PM (GMT -5)
I too am so sorry you are going through this.

I have no idea why doctors want us to take tests that are unreliable. It baffles me.
Posted 11/22/2016 2:58 PM (GMT -5)
I am seeing someone who was trained by ILADS but her knowledge of Babesia is rather limited and she's frustrated as to why I'm not getting better. This is my second time treating Babesia and no one believes Babesia can be relapsing....so she wants a second opinion but he big "hospital ID's" seem to be the worst. They just think I have fibromyalgia or depression.
I'm currently about a month and a half into my second round of Mepron and zith. More muscle aches than usual but that's about it. Not much of a difference so far.
I take my parents to all my appointments but they rarely back me up on anything or listen to me. They both run their own businesses and don't listen to others very well sometimes. :/ or teamwork.
Posted 11/22/2016 3:12 PM (GMT -5)
Violet - is it possible for you to see another LLMD? You can just say you'd like a 'new set of eyes'...since you seem to have a persistent Babesia infection.
Posted 11/22/2016 3:33 PM (GMT -5)
I can't seem to find another LLMD I haven't seen on insurance in CT. :( a lot have gone off insurance.
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