Back in July I flew all the way to Connecticut from Oregon to see a Lyme friendly Nuero I had seen years before. The appt. was weird my flights were all delayed I barely made it there and hadn't slept for 36 hours I was in crazy mode by the time I saw him. I was a little thrown off by his Diagnosis he believes we killed the Lyme 3 years ago with IV Rocephin. I was better for the last three years and all the lesions in my brain and spine had disapeared. After stopping oral antibitics after having a baby all my symptoms came back and my last MRI showed 13 new lesions, worse than before. Now he thinks its Clamydia Pnemonia causing my MS like disease he put me on oral Minocycline, Azthromycin and pulsing Flagyl(Stratton Vanderbelt Protocol). I don't belive these antibiotics are strong enough and really wanted IVs again to to try and get rid of my lesions again, it worked last time why not now?
So I am willing to try his theory but he was suppose to write out a treatment plan for my local Dr to follow and he has not. He's missed all our phone appointments we had scheduled he did call once when he wasn't suppose to and I was working and could not have a 15 minute talk he promised he would call back on our scheduled day and he did not. Since then I have left a message every 2 weeks to make another phone appointment and know one has called me back. It cost me over $2000.00 for this trip all of our savings we are now broke and he never follows up. I don't know what to do my Local Dr will not treat me without his recomendations.
I would never want to make a complaint about a Lyme friendly Dr but I believe I am not being treated properly. I could have spent that money on a Dr that follows up, he was my last chance what should I do?
Thank you for reading hope everyone is enjoying the Holiday Season!
Finding Peace In This Crazy World !
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007