I might rock the boat a bit with what I'm about to say, but here goes. Why do we fight so hard for long term abx and in every single lyme show, it looks like it is hard to get diagnosed, but once you find that perfect dr, they put you on a picc line, and voila, you are better?
I feel like we are short changing ourselves.
Why are we not fighting for research to identify exactly what we have? We need more accurate tests so that we are not blindly treating for things we may not even have and possible further damaging ourselves. I know I have been treated for Mold, heavy metals, bartonella, lyme, chlamydial pneumonia and many many more. But yet there is not one accurate test telling me that I really have these things.
I know that our LLMDS and LLNDS are doing the best they can and are willing to at least "hear" and "believe" us. It is not them that I am knocking. As for now they HAVE to treat us based on symptoms. But why are we settling for that? We need to demand accurate tests. I want to know I have something, not just guess and spend precious money and time on treating something that is not my issue.
"When my family watched "Under Our Skin" and the "Dr Phil Show", they all said, it looks like if you just get a picc line you will be ok. Where as I LOVE that these shows were done, really love it and think both were awesome, it is just a peek through a slightly opened door at Lyme, and are slightly misleading.
These shows make it look like the people in them live happily ever after once they got that iv antibiotics. This is not the case. I was thinking about something Brooke Landau said in one of her interviews, about how we have to not "expect a cure." I totally agree. Right now we can't expect that. Want it, yes, but the reality of Lyme is it's a lifelong battle for most of the people who end up chronic. It is also reality that a huge amount of us are not getting better no matter what treatment we are doing. I know a lot of people who have gone through the gamut of antibiotics and supplements and one alternative treatment after another and are still sicker or even sicker then when they started.
Yet, I hear people swear by their dr or their treatment...as they lay in bed day after day, not really living, just surviving. I say we fight to "live" not just "survive."
And what about the people who simply cannot afford to treat? I am in this catergory myself. Is it fair that one person gets a port and long term abx and the next person can't even make it to a dr appointment because it costs $2,000? And that's just for the first appointment. Then how do you follow up or pay for blood tests, meds or supplements?
Here are the things I wish we would be trying to achieve:
1. Recognition of Chronic Lyme
2. More Accurate Tests
3. Research
I think that we need these three things to move along any further. I hope with the airing of the Dr Phil show and all the things that Lyme Patients are doing out there, that these things will start to happen. Once they recognize it is chronic then I'd think companies would want to be the first to come up with a cure, right? I'm just not sure where to start or "who" we need doing the research.
~Just my thoughts for the day.
