I feel compelled to join this particular discussion. I believe all of us are on this forum because we're either sick, have been sick or love someone who is/has been sick-sick in ways that for a variety of reasons too often mystify and/or polarize medical professionals = many of whom are more comfortable with a more typical presentation, a more typical treatment and a more typical successful response. This is not us, is it? We don't have to look too far here to read post after post of people who have had horrible experiences with health care folks, including being called crazy or worse. Too many of us have been ignored or insulted or patronized or ridiculed, by so called health care professionals. Rather help us look for real answers, they're most comfortable making US the problem because then they can wash their hands of us and not have to spend any energy on things that don't fit in their small comfortable boxes.
So as a result, we are too often left to question our own sanity, question what to do and who to turn to. It can be too exhausting and feel it's too risky to keep putting ourselves out there - realizing we're not likely to find who or what we need easily. Who amongst us has not/does not feel fearful, angry, and downright desperate at times? I certainly do. And because of that it is so understandable and easy for us to want to find everything and anything we can to help make us better. And unfortunately, that makes us very vulnerable to those folks and companies who can use our vulnerability and desperation to their own financial advantage. I don't know how we readily identify those people or places on our own. It seems we can best share our experiences and thoughts and keep our minds and hearts open so we can hopefully help each other.
I can share a bit of my own recent personal experience - as it does relate. I've learned that it's very important to not assume that just because someone is an LLMD for example, that what they say is gospel. We can't assume that because someone is considered a guru, that they always has our best interest at heart. Being considered a guru often comes with an ever increasing ego and that can often go hand in hand with narcisism. It is very important to be brave enough to indeed try and find out who is profiting from the products he/she touts as being good/needed, etc. I didn't ask such questions. I can blame it on my trusting that because someone is highly visible in the Lyme community, I didn't feel the need to question. I thought that surely being a leader meant that someone else was monitoring such things. I know, I was naïve. I also think my lack of initial questioning was due to my fear of never getting better and due to my desperate hope this might be the person or the treatment or the g" that would help give me and my loved one our lives back. I thought that because I saw and heard that this person was "one of the very best" -and therefore what they recommend or say is true - surely this was being monitored by someone who knows far more than me. That doesn't seem to be the case. I thought all of us - including LLMDs and their touted clinics were in the same boat with the same goal- getting us well as ethically and respectfully (including financially) as possible. I've learned that's not always the case.
I learned the hard and expensive way that it's better literally to breathe and take time to ask, do some real research, etc before deciding to blindly "go for it" in large part because someone renowned is recommending or touting something. The effect for me has been that I am more cautious (which can also add to the fear ---- what if my doing research on a doctor or clinic or protocol, for example makes my treatment even more delayed?!). The additional effects are that I am outraged that someone could be so arrogant as to think that their word is gospel and woe to anyone who might have questions about it or them. I feel sad for myself and for others - I doubt I am alone with this kind of experience. It can be hard to talk about - none one wants to feel they were "played" especially when finances are so much a central part of our treatment and care. It's hard to not feel foolish. A few hundred or thousand dollars gone to me (and I image for most of us here) does not have the same meaning and consequences as it does for someone whose making a great deal of money as a guru in the field.
I can choose to stay stuck in this negative experience and its emotional and financial consequences or I can choose to move on, learn and share. That is what this post is about. And I will say despite all of this reality for me, I am still hopeful.
I think this forum is a gift - to share what we've experienced, to pose questions, to say what we think, what we know and don't know, what we believe, what we hope and what we want. We can provide those things to each other through this forum and thereby truly help each other. And of course, each of us can "take what we like and leave the rest" with any post, including this one of mine. We don't all have to agree (thank goodness!) and yet, I think we owe it to ourselves, to each other and to our united dreams of getting well to share as honestly and best we can. Questioning is not a bad thing. Anyone competent should be welcoming questions. If questions aren't welcomed, that's a big red flag for me now.
I hope this all makes some sense. I've come through an unfortunate experience and I'm trying to learn from it so I can use it to help me navigate this often maddening journey of healing and hopefully help someone else to not go through what I did. May we all get well soon. Thank you all, Kathleent