Monday, April 14, 2014

For people who have stopped treating Lyme:


There is a group of us, like myself, that don't "treat" Lyme anymore. We have just reached a place of acceptance, for various reasons to stop treating.

There comes a time and place for some of us who have been sick for a long time where you realize this disease may be lifelong. Treatment may make some of us better, while others, it makes us worse, and I'm not talking about the "herx" reaction, which I believe is an over used term.

I am talking about just being at a place of wanting "quality" of life and to live as functionally as possible. When I treat, I am bedridden. When I don't I am able to shower daily, go to the store if I need to and basically live life. Not to the degree I prefer but it's better then being bedridden.

I am not at an age where I feel it necessary to keep starting new protocals every six months. I don't feel I have that kind of time left. I just want to live happily whatever life there is left. Quality vs quantity.

If I saw a treatment that consistantly made people better, I'd jump on the bandwagon. The day that 100 people a day were leaving my Facebook wall because they were going back to work, is the day I'd start that treatment. But so far, I am not seeing that. In fact some of the people I see claiming to be "better" seem the sickest to me out of everyone. I don't know if it's what I call 'Lyme denial" or just their wishes are so strong to be better that they can't accept they are still ill. I believe our "cure" is still out there.

And im not saying treatments dont help anyone..some people definetly get helped..but for me, I didnt.. and this is what i choose to do. Live as functionally as I can. And man does that take the constant anxiety off of me. I don't have to try to make myself better, I don't have to worry about how I'm going to react to the next protocal I start. I don't have to worry about keeping up on the latest Lyme treatments or understanding the complexities of Lyme Disease. I can leave that in the hands of researchers, doctors and whoever else is smart enough to figure it out.

I do do some natural things, like juicing to try to boost my immune system. But other then that I think it's time to get back to living. For me.

I guess my way of fighting Lyme now, is through activism. We first need recognition so we can get some real research. Trying to end it for future generations. So when I do these protests or awareness events, Im not fighting for "treatment" necessarily...not the current treatments, Im fighting for recognition of this disease. Then I believe true research will be done.

For People Treating Lyme Disease


I have had a couple people say to me that they feel like failures because their treatments aren't helping them. I want to clarify something for these people. 

*It is NOT your fault you are sick or that Lyme treatments suck.

* We are all guinea pigs right now, nothing is proven yet. You are paving the way for next generations to have better treatments. 

* You are not alone, I see thousands of people a day not getting better, so don't put that responsibility or pressure on yourself, it is NOT you that is failing, it is the Lyme treatments and medical communites that are failing to give us proper treatment or to find a cure. 

* You did not ask for this disease. It is just simply not your fault.