Learning to take control of my care plan

Dear Lyme Forum Fellows,
I hope I can figure out how to tell you about my day. I have had to integrate a lot and I'm not sure how to articulate my newfound understanding.

My LLMD is an Integrative Medicine Practitioner, a Lymes Specialist. She requires that patients have their own Primary Care Physician. Two weeks ago, my PCP of 15 years and I parted ways as he could not support the diagnosis made by my Lymes specialist. He said, "I don't know what she's doing," in response to her treatment protocol, and " Good luck, I hope she helps you. It's not my field."

So today I went to have a physical with a 2nd dr, an internist I found who takes my insurance and has a nice website about how open he is to complementary care alternatives such as herbs. In the 2 hour visit, he did an excellent job of discrediting my LLMD. I felt so low, and so confused when I left there. He wasn't a bad doc, in fact I think he was a good doc trying to do the best he could for me, within the limitations of his experience. But I was ready to give up on the Lymes treatment protocol and go see an infectious disease dr for a spinal tap by the time I left there.

I went home and cried a lot, then decided to call the LLMD back and address the issues with her. I told her about the supplements he objected to and why. She shed light on why there is such poor literature out there for regular docs to read and digest.She was not opposed to tweaking the protocol and letting me skip the supps the doc rejected. She was willing to work with me, and realized how hard it is to find a PCP locally who will work with her and not against her.

My head is still spinning about how difficult this is. Today I had my first hand experience of the two separate "camps", ILADS and IDSA. I realized at a point that in some respects I actually had to choose sides! I didn't enjoy the experience one bit. My health is the most important thing for me to be able to live my life as I choose, and I am the only one responsible for my health. And yet the knowledge is more in their hands than it is in mine right now as I've only just begun to read up on Lymes and its treatment. It is a very precarious position to be in. To have to choose, and choose wisely, when so much is at stake, and when choosing wisely is difficult because you feel like you are in the dark. You try not to be manipulated, but you realize that people are telling you what they want you to believe and the two schools of thought are very different.

There is alot more I could say, but this is enough right now. I'm exhausted.
For now, I will mainly remain on the protocol with a few adjustments. And we will see where we're at in November at the follow up appt.
your feedback will be very helpful. Many thanks.

Based on your username I'm assuming you're from new jersey too...feel free to email me and I can let you know who's treating me.

Sorry to hear about your confusion :( I had a few doctors that discredited the lyme theory when I first brought it up a few years ago. However, I now have a PCP who is lyme-friendly, and although he referred me to an LLMD because he can admit he doesn't know a whole lot about it, he still wants to keep up to date on my treatments and what is going on. Not because he wants to discredit my LLMD, but because he wants to learn more about it.

It might take a while, but if you want a PCP who will work with you and your LLMD - not necessarily praise everything they do, but work with your treatment plan and help guide you - you might find a lyme-friendly PCP who is knowledgeable enough to give you feedback without causing so much confusion.