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Strange medical crap

Last Monday, I went and got massive amounts of blood drawn for tests. Tuesday I had a brain MRI.

Today was my appointment to get the results. I was totally stunned, ya'll, and hope to find out the truth soon.

Nothing wrong on the MRI. No additional auto-immune diseases to go along with the APS. No Hep C or HIV from my blood transfusions.

What came back as positive? Lyme disease!

WTF? I mean, really. LYME DISEASE????

I've done a lot of reading to figure this out, because neither Scott nor I think I actually have Lyme disease. I think it is a false positive due to the APS. I have arthritis and I have an autoimmune disease. Both are noted to sometimes give false positives on the test they did.

I have my medical files going over to an infectious disease specialist for review. I hope he will take me on just to do more testing and rule this out.

I also have found ONE rheumatologist here in the Dallas area that treats APS, and SURPRISE SURPRISE he doesn't take ANY insurance. He works as an out-of-network provider, and will file insurance for you, but has said that he likes to take all the time needed to work with his patients rather than be stuck to a cut-rate, shove them through the door type of practice. I just need to find out how much out of pocket this 'patient-centric' practice would cost me :)

I wish more in the medical field had a clue when it came to APS. The patient is NOT supposed to be the expert.


( 6 thoughts — Whatcha' think? )
May. 20th, 2008 04:05 am (UTC)

LYME diseas??? WTF girl???

I sure as HELL hope this isn't the case. Sheesh.

And yes, I hear ya about knowing more than docs do. It's FRUSTRARTING being so damn smart isn't it?


You're in my prayers!!!!
May. 20th, 2008 10:33 am (UTC)
You're the third person I know who has been told they have Lyme Disease. What's up with that?
May. 20th, 2008 12:09 pm (UTC)
Looks like there are several ways to get a false positive, and it depends on the test given. There is an ELISA test, which seems to be positive more often, and if you get a positive, you should have the Western Blot to confirm. I had the western blot, and it was positive on half of it (the shorter term antibodies or something like that - igM) but negative on the long term - igG.

Since it was my hematologist, he really doesn't know much about Lyme disease and wants me to have the infectious disease specialist review things. My hope is, he'll come back and retest and it will be negative, or we'll be able to definitively say somehow that it was the APS causing the false positive.

May. 20th, 2008 05:31 pm (UTC)
What a nightmare! You don't ever get a break, do you?
May. 21st, 2008 02:18 pm (UTC)
My GPs and even my Neuro (MS specialist) have all said that I am more of an MS specialist than they are - and that I am definitely the expert when it comes to *my* MS (we all have a different subset of the symptoms). I believe that, if any of us have more that a common cold (or anything else that doctors are used to dealing with), we HAVE to become expert patients with regards to our own conditions. In the UK there is even an official scheme called Expert Patients where we help to educate the non-specialist medics about what it is like to have MS, etc.


Edited at 2008-05-21 02:19 pm (UTC)
May. 21st, 2008 02:22 pm (UTC)
P.S. Lyme is often a misdiagnosis en route to MS in the UK. It is only when the MRI shows lesions and you have a number of distinct relapses in different parts of the CNS (and sometimes when your lumbar puncture / spinal tap is positive for MS - not everyone with MS get a positive LP) that they will definitely diagnose MS. I am only using MS as an example because that is what I live and know.

( 6 thoughts — Whatcha' think? )