Friday, April 20, 2012

The Reality of Lyme Disease

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. 

9 comments:

  1. This is an excellent post! I always say "compared to others I am so good...so I won't complain". We need to make promises to ourselves, our children, and those who get sick in the future that we will continue to push for proper diagnoses, proper treatment and a CURE! Remission is not a cure...and neither is functioning only because you take your antibiotics everyday.

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    1. THank you Alyssa, and thank you for being truthful about it. I see so many people not want to "admit" all this about Lyme. I think its part of the stages...denial. Not wanting to admit Lyme has affected you as much as it has. Thanks for readin my blog, hope today is a good day for you. <3

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  2. Your blog hit too close to home today, as I sit in my recliner trying to get up. Had an appointment this morning , takes me two hours to get ready for a half hr apt, and that's my day. Maybe on a good day, I can cook. Maybe not today, maybe not tomorrow either..as I sit in my recliner waiting to get better, I have great ideas, things I want to do, people I want to help. Maybe tomorrow I say. Maybe a week goes by, maybe a few hours.. I try to fight.. Accupuncture, antibiotics, supplements, rife chiropractic, support groups networking. Only to find myself back in the recliner.... Another day. Another pain, new symptom, new joint, another broken relationship, another failed attempt at a real life. Thank God for facebook.. But also the only facebook I can relate to is my Lyme friends. As I watch others who are not I'll live their life and travel, go to different destinations, it reminds me of my former life. My former life I traveled the world, worked full time, and took things like getting out of bed for granted. I travel for free , have alot to live for and can not get out of the recliner. There has got to be an answer...... If I can only find it, If I can get out of recliner..... Maybe tomorrow...

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    1. Wow Pixie, seriously I got chills reading your response and then I started to cry. I can soo relate. I am sorry you are living through this. But yeah like you said, thank God for Facebook and online networking. It makes me wonder how many people don't even have that?

      And another thing that makes me sad is where are our families and friends? How can such a group of sick patients fight this massive wall we are up against. We need help from people who have the strength. But I guess a sick person with a passion is stronger then a well person with not a care in the world.

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  3. Lisa, I couldn't agree more. You put words to my thoughts about all this too. I'm an optimist but I'm also a realist. I recently had a significant, unforeseen setback and have been feeling rather shell shocked by it. Feeling so bad physically yet struggling to keep motivated and putting one foot in front of the other. Doing all the right things and still yet....what you said. And so it is for many of us.

    I've been reading your blog for a little while now and just wanted to say thanks for being another voice of truth and compassion. Love and blessings to you.

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    1. Hang in there Michelle, Im so sorry about your setback, but you will get there. BIg things seem to be happening, slowly but surely, so we gotta hold eachother up through this....We will make it <3 xoxo

      Thank you for reading my blog Michelle..I hope it helps you.

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  4. getting media attention is just a stepping stone to opening this whole thing up... to getting money and minds concentrated on the issue and hopefully getting some results. I agree- my goal is a cure, I can live with remission and abx for myself, but I have 5 kids with Lyme and want them to have some sort of life. So for them I fight for a cure. Everyday I wake up swinging for them, I try to direct my anger in proactive ways that leads to awareness and in earning money to pay for all of this. So we make enough noise, and maybe more people will hear us, like the Whos in Whoville, it takes a lot of small efforts combined to get the attention of those who can truly make a difference. Coping with Lyme is not enough, not for my children at least.

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    1. Hugs Kate..I pray your kids get real answers soon...Its just not fair what is happening right now.

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  5. Just went back and read this in one of your comments.

    "We need help from people who have the strength. But I guess a sick person with a passion is stronger then a well person with not a care in the world."

    Powerful statement.

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