Doctor's Appointment

I went to my family doctor, who is currently treating me for Fibromyalgia. I told her that I wanted to get off the medicine I was currently on because it is making me extremely constipated and it isn't helping. I then told her that I wanted to wait to try anything else (I should say retry because I have already been on all of the Fibromyalgia medications in existence!) until I went back to the Lyme specialist. She then got a look on her face and said, "you know they don't practice conventional medicine", and I told her that I was aware of this and that I wasn't going to start any treatments without taking time to consider it first and that I would discuss any treatment plans with both of my parents. She then went on to say that "they usually treat with long term antibiotics which can be very detrimental to your health and they use testing that is not very accurate (she was referring to the iGenex tests)." I again reassured her that I was looking into everything and I was not jumping in to any treatment plans until I considered it thoroughly. She followed up with something like "well, it is really up to you, I just don't think it is a good idea, but you are the patient and in the end you have to make the decision on who to see. Just make sure you get the records sent over here." I have been a mess since that appointment. It didn't help that I came home to an empty house. A few hours later I just couldn't stand to be alone so I drove to my mom's work and even though I could only talk to her for two minutes, a hug was all I needed. She talked me through it and I came home. But, I was still a mess for the rest of the night. I didn't fall asleep until probably two in the morning! I am just second guessing myself. I just don't know if I am doing the right thing. I am scared. Really scared.

Post Edited (twinmkm) : 11/25/2014 12:47:59 PM (GMT-7)

twinmkm—

I am so sorry you're going through all this—as if being sick isn't difficult enough. I wish I was there to also give you a hug. I love that your mom was there for you—she is going to be a rock for you during your journey.

Totally agree w/ GP to follow your instincts.

I hope not to overstep any boundaries but I'd like to offer a few pointers the next time you speak w/ your doc:

First, before you speak with her, I would do as much as possible to educate yourself about 2) fibromyalgia and 2) lyme. This will give you and your mom some confidence in your interactions with both the LLMD and your family doc. Perhaps your mom can come with you for all of your appts… it's so important to have a "team" behind you.

Fibro
Many, MANY, TOO MANY of us lymees were first diagnosed with fibro and given Rx and sent along our merry ways. But Fibromyalgia is simply a name given to a group of symptoms. Until the pharmaceutical industry could develop drugs to address the symptoms (and make an immeasurable amount of profits), the condition simply didn't exist. Sufferers (mostly women) were told their symptoms were psychosomatic and put on psychotropic drugs (further complicating and exacerbating their illnesses). "Fibro" is not an explanation for the cause of the condition… so I challenge patients and MDs to LOOK FURTHER. Something else is going on to cause the symptoms. If the meds work to quell the pain and discomfort, that is good and can help tide you over until you find out what is really going on. It is critical to find out what is causing the condition so further damage doesn't occur. It's not enough to call it fibro and call it a day.

Lyme & Co.
I don't understand the point your doc was making. What alternatives was she suggesting, given the fact that lyme specialists don't follow conventional medicine and the testing is inaccurate? In other words, instead of focusing on her issues with the testing and the treatment—what is her plan for finding out if you have lyme? Just ignore the signs because the tests are inconvenient and she doesn't understand the treatment?

There's some faulty logic there. The way I read your statements, she was almost suggesting that since there are these "issues" with the lyme specialists and the testing, that lyme doesn't exist. A lyme specialist knows that they have to draw from their experience treating lyme patients that they have to make a clinical diagnosis, given the issues with the tests. And there is a great deal of information now available in order to support them in that process. So, perhaps ask her if she is prepared to/capable of/willing to make that clinical diagnosis and ask her to share how she will do it. She likely can't and won't because she doesn't know how… that's why you would see a specialist.

I'm sure she is a great doctor—or you wouldn't have been seeing her. But doctors only know what they know. Lyme & Co—this is like a whole other universe. It's like asking a figure skater to compete in the luge at the olympics. They can skate—but they are not trained to compete. You need a specialist—just like if you had a brain tumor, she would recommend you to a neuro specialist.

I'm sure you trust her for good reason—but she is out of her league on this issue and she doesn't sound like the kind of doctor who is going to embrace that fact gracefully. That's OK. YOU are in charge and you do not have any obligation to include her in your test results or treatment. Or—at least you are not obligated to do it right now. You can fill her in later.

If I were you, I would get a foothold in your lyme treatment and wait until you know more about your situation and have developed a good relationship with your LLMD and a plan of action you and your mom feel confident about. And then you can update her if you choose—not to solicit more inappropriate and unsupportive attitude, but to simply keep her in the loop and help educate her a little bit on something new to her. You are in charge, my dear. ;)

Please let us know what your next steps are—there is an outstanding and generous group of people here with an incredible amount of info to share with you. W'ere rooting for you…

-p