Just a quick update on Paige.
Jim spoke with the nurse for neurology last Friday and her EEG was normal (duh, everything has been). They said that they would call us back to schedule the 3 day EEG where they really put her through some intense stress to see if they can trigger an episode.
I think we are going to decline this for now. I don’t want to put her under undue stress to get another normal test result.
We also heard back on her Lyme test (finally) and the original result was positive, so they retested it and one was negative and one showed markers. We aren’t really sure that this means to be honest. Does she have Lyme or not. Our primary Dr told us to take the results to cardiology but cardiology is who told us there is NO WAY at all that she has Lyme and since her tests with them were normal she doesn’t have future appts.
Jim and I have sought council, both among people who have Lyme and natural practitioners and we have decided to have another Lyme test done. This time at a super sensitive lab and have them check all the bands (I am learning what all of this means). We will also add in a test that looks for co-infections, since this is very common with Lyme. Of course, like before, these tests aren’t cheap!
If the tests comes back positive we will be looking for a Lyme Literate doctor for Paige. There are only a couple in all of CA and NONE take insurance. So this will be a huge financial undertaking.
If the tests come back negative, we will be scheduling appoints with 2 different natural practitioners. One is in OC and one is in Northern CA.
All the while we are still consulting with a man in WA that is bound and determined to help us find the right diagnosis for Paige. He has been a HUGE help already and we really appreciate his honesty and candor.
So, we still don’t have any answers. We are still searching and praying. Paige has had a few days where she feels pretty good overall. She still has on and off dizziness and chest pain (bad several times yesterday) but overall she is feeling ok. She is scared to weigh herself, so I am not sure of her weight loss/gain, but last Tuesday she was down 8 lbs since the end of November.
Thank you for your support and prayers. We really appreciate them.