Update

My brain MRI came back with white matter. Still waiting for my Neurologist to explain the findings.

I have a real LLMD ready to schedule me in for early July.

My brother fears I will spend needless money on the LLMD since they don't take medical. He thinks I should consult a friend who has connections at UPENN. I can't really afford the 750 I will need just to initially see a LLMD and will have to borrow money, putting more stress on my relationship.


It is possible for someone who was infected with Lyme disease to test negative because:

Some people who receive antibiotics (e.g., doxycycline) early in disease (within the first few weeks after tick bite) may not develop antibodies or may only develop them at levels too low to be detected by the test.

that was taken from the CDC website and I believe is what has happen to me.


Sorry for rambling this is a crazy disease and just wanted all to know I'm ok and keeping up the good fight!!!

I too had white matter on MRI and the neurologist I went to admitted that he really didn't know lyme. He told me it didn't look like MS but wanted to do a spinal tap anyway.

I agree with betterhealth, lyme is not to be fooled with. If you have medical insurance, pay an LLMD and submit for payment as out of network. It will save you alot of time, money and your health in the long run.

UPenn is a wonderful hospital but there are many many wonderful doctors out there that just don't know lyme. It is still controversial and not acknowledged by the entire Infectious Disease Society as a chronic illness. So if you do go UPenn, be wary and do your research yourself so you know what you are getting into.

I just went to a lyme forum where the doctor speaking pointed out a very scary fact about lyme: the testing is based on your body being well enough to develop antibodies. Lyme attacks the immune system so If your immune system is low from the disease, it will not in fact develop antibodies and you will therefore not test positive.

Just as an example of the reliability of testing, my husband was tested through a local lab and a hospital sent his tests out to their speciality lab and tested negative across the board for lyme and coinfections. However, when tested through a lyme specialty lab, he lit up the bands like a christmas tree as well as testing positive for numerous coinfections. Can you imagine how many people in hospitals are being incorrectly told they are not infected?