Hello, my name is Talia. I was diagnosed with Lyme about a week ago after 2 years of symptoms, mainly brain fog and dizziness, and countless doctors telling me it is all in my head! I’m really just looking for support and to talk to people who have gone through this or are going through this. Lyme is terrifying and I’m trying to remain positive about living with a good quality of life. I’m working with a chinese medicine practitioner and trying the Buhner protocol.
Welcome to Ben’s friends.
I’m sorry to say this but your experiences with doctors is not unique for many of us with rare conditions, in fact, it’s really common. They have their ‘normal’ or common conditions which they can make an easy diagnosis with, but anything outside of ‘normal’ and that line “…it is all in my head!” is used ad nauseam. Part of the problem is that we often go to dr’s wanting answers. Sometimes those answers are not easy to diagnose, but rather than admit they don’t know they put it back on us, the patients, as if we choose to be in this position. As I’m often saying ‘…Who on earth would choose this??? Not I, that’s for damn sure…’. Me, personally, I’ve had more diagnosis than I can count on my fingers (and toes), every thing from ‘He’s crazy in da coconut’ through to a confirmed, documented diagnosis. But it took things to become life threatening before they’d actually investigate properly and then they came out with the line 'Ohh look what WE found…" like it was all something new, I’d been telling them for decades something wasn’t right. We’re just the patients, we wouldn’t know. They’re the Dr’s, they’ve done years of study, so they know. But when they don’t know the whole system fails and we the patients have to wear it all.
But I can assure you for many of us within the Ben’s communities, we’ve been there too.
I hope you can find the answers you are looking for.
Merl from the Moderator Support Team
I’m so sorry to hear you had to go through all of that, too! It was very hard, on top of not feeling physically well, to be told that my body is healthy and my mind and soul were diseased. Seems like if it’s not life threatening, you can live with it… is the attitude. Quality of life is not often valued in our western medical system. This is something that I will work through as I heal. It’s definitely helpful to connect to others and say and hear, “ I’ve been there.” Thank you and be well!