Today, Gavin amazed us yet again. This time it was for Miss Stephanie in Occupational Therapy. While he has taken a spoon and put it in his mouth before - today it was over and over and over. It looked just like this...
Each time he fed himself, we cheered. He LOVED that!! And I loved that each time we cheered and clapped - he'd show off his cute little dimples.
This morning, Gavin and I headed to DuPont Hospital to meet with one of the Infectious Disease doctors. It was a very interesting visit and I'm SO glad I made the appointment. We were there to discuss the possibility of Gavin having "Congenital Lyme Disease" - and also to discuss my diagnosis. He looked at my lab report and told me that my results were "suspicious" to him. I won't get into writing all the details just in case I get things wrong here and there (my brain is so screwy lately!). Basically, he thought I might have a "false positive" - something I didn't know was possible. He said that patients with Rheumatoid Arthritis often show up for a positive Lyme because of how they do the test. The Lyme tests are not that great. But people freak out and go crazy treating the Lyme Disease they think they have...sometimes missing what they really DO have. He suggested the possibility of Mononucleosis, Epstein Barr or Parvovirus. (I called my doctor before getting in the car to go home and he ordered more tests immediately - which I got today.)
He also said that if in fact I did have Lyme, it would be a recent exposure. In his professional opinion, there's no way I had Lyme before. So the thought that Gavin may have Lyme from birth was thrown out the window. Getting him tested, he thought, would be for our curiosity only. I decided that I'd wait until the tests from today come back before I make a decision on that one. Right now I'm on information overload.
I left his office feeling good - a little confused - and informed. I do worry about the accurate testing. If I don't have Lyme...and the new tests all come back negative...then what next? I would feel relieved if I found out that I didn't have Lyme Disease after all...but I would want some kind of explanation for why I'm feeling as bad as I am!
I have no time for all of these symptoms. Not when my Superhero is staging his next big miracle! I'm telling you - and mark my words - something is brewing with our Gavin.
I had a false positive a few years back. Long story short...all of my symptoms were traced to a spinal problem that my dr. missed on my original MRI. Not sure how he missed a huge piece of bone fragment poking my spinal column but he did. I could hardly walk. My legs would feel too heavy to lift most of the time. I had no sense of balance and the fatigue was just awful. I know what you are going through and I hope they figure it out soon. Have they ruled out MS? I can't recall if you've been tested for that or not.
ReplyDeleteI had a false positive in January of 2011. I went to the doctor with pains in my calfs, feet, and joints. They ran tons of tests and said it was Lyme. I took four weeks of antibiotics but the pain persisted. I saw a Neurologist who ran more tests and came up with nothing. I was sent to a Rheumatologist who said I didn't have Lymes. He told me I had a pain syndrome. I still suffer from pain in my legs with no diagnosis really. I got tried of being poked and prodded and gave up. I hope you are feeling better soon.
ReplyDeleteAfter going through donor egg IVF myself, I found myself feeling much like you. Maybe side effects of the medications. I was also tested for Lyme's...it was negative. Got on a regimen of quality supplements after muscle testing and finally felt human after many months of thinking I was going to die.
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