What to do when Dr doesn't finish his followup?

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Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 12/13/2009 1:01 PM (GMT -6)   
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!smilewinkgrin
Finding Peace In This Crazy World !
 
Beth
 
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


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 12/13/2009 6:52 PM (GMT -6)   
What an unfortunate situation. To me, this is just another example of how difficult Lyme and like diseases are. Were your medical problem something straight forward and well researched with an established treatment protocol you could have gone to a local doctor instead of paying so much to travel to a far-away specialist who doesn't follow through. I would think that before you do anything it is important to know what result you want. If you want this doctor to follow through and write the treatment plan for your local doctor, then sending a registered letter, or appealing to the office manager or nurse in his office to help you could be effective. It sounds as if this doctor is pretty disorganized if he isn't writing your treatment plan, and he misses phone appointments without having someone call you to explain why. If you have given up on that and want to alert others and the medical board of this doctor's practices (which, to me, sound unethical if he made a commitment to provide something for which you allocated expenditures for travel and the appointment and then he does not follow through) then contacting the medical board seems a good response.

I hope you get this resolved in a way that is most beneficial for you.

Rose
I have Lyme; it doesn't have me.


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 12/14/2009 2:24 PM (GMT -6)   
Hi Really Lyme,

I am sorry you are having to deal with all of this. Try calling the docs office every couple days and leaving messages about what it is you need and hopefully you can appeal to their "better sides" and persuade them to help you. Also, you may have more luck if your local doctor's office calls them and asks them for their assistance. Maybe they will be more efficient when they deal with calls "doctor to doctor".

Best wishes to you, bablymers mom

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 12/14/2009 4:12 PM (GMT -6)   
Send a certified letter to the doctor listing exactly what you need from him. Keep it brief but be very clear. List any upcoming phone appointments. Include your local doctor's contact information so that it is all in one spot. Putting it in writing usually helps get things moving, especially of all the information is in one place.

Good luck, I hate when people don't follow up on things they promise. This is your life
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