If you are chronically ill and looking for answers to why you can't seem to get better, please consider the following suggestions.
Gene Mutations
Mold
Sunday, November 23, 2014
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.
Thursday, March 6, 2014
Lyme or Not Lyme?
There is always a debate going on whether all these people who are sick, with Lyme, Fibromyalgia, Chronic Fatigue Syndrome, MS, Lupus, Alzheimers, Rheumatoid Arthritis and many more.....really have Lyme Disease or some other infectious agent, virus, contaminant or parasite?
Let's first admit most of these diseases have similar symptoms and similar epidemiology. None of these disease have accurate testing and most of us who are chronically ill with "invisible diseases" have been diagnosed with several of these. See Charts Below.
Let's first admit most of these diseases have similar symptoms and similar epidemiology. None of these disease have accurate testing and most of us who are chronically ill with "invisible diseases" have been diagnosed with several of these. See Charts Below.
On my other website, whatislyme.com, I am working on a Global Chronic Lyme map right now. And as Im adding patient stories on there, I realize it starts with a tick bite for many people. Many stories starts with...."when my son got bit"...or "when I got bit fifteen yaers ago"...so there has to be some connection to insects...beginning this "sickness"..
Im not sure about anyone else but i had a day where I was healthy and the next I was not..there was a line where something happened..and i was never again well. If it was soley environmental issues then I would think that would happen slowly over time.I do believe other factors like environment and our bad diets play into why we can't recover from being chronically ill however.
I believe there is combination of factors working here...Here is my theory:
1. Through our lifeteimes we are exposed to multiple chemicals, infectons, viruses and parasites, but our immune system has kept them at bay.
2. At some point we are exposed to Lyme Disease, through tick bites, sex or other means or insects. It lowers our immune system.
3. Antibiotics might work in some straight up cases or early infections, but most lyme cases go undetected long enough to treat early and what happens is it lowers our immune systems and all this other stuff we were exposed to comes out.. Our immune system can no longer fight off infections, viruses, parasites or detox things like mold exposure, metals and chemicals..
4. Our body organs and systems just break down. Our nerves are shot, our vaso vagal nerve no longer functoins properly, our adrenals are shot, we live in the "fight or flight" response.
5. What started out as Lyme, a bacterial infectoins has now turned to auto immune dysfunction and multi organ dysfunction.
6. We can do our best to heal, eat right, exercise lightly, be nice to ur bodies and do some immune boosting. We should live our lifes to the fullest and never give up, but our lives and functioning will never be the same again. The "cure" to this multi systemic dysfuntion is not found yet.
To sum it up, sometimes I wonder why I am doing activism. Lyme activism in particular. I feel like I know less now after studying this disease nonstop for the last 10 years, then I did when I started. There are rips within our own community, people taking sides, antibiotics or not antibiotics, natural or not natural treatments, do this, do that....The truth is, noone really knows the answers, if they did we would all be better. But the reasons I keep on are obvious. There are millions of sick people out there. We all have the same symptoms. We all are suffering without help from the medical community. We all are being abandoned by our friends and family because we have a disease that noone understands. We need to stick together until this thing is figures out. Lyme is an umbrella term for whatever illness is that we have. We need more research, unbiased research.
Epidemiology Chart
.png)
Symptom Chart
.png)
Cause Chart
.png)
Thursday, February 13, 2014
And How Are You?
Ok, you all hear my ramblings on this page all the time. Stop by and tell me how YOU are doing? I would like to hear from you all and see how you are really truly doing.
In the meantime this picture is for all you.
Have a nice wonderful day. Take care of yourselves today. Rest, be easy with yourself.
Tuesday, February 4, 2014
Sick of the Lyme Situation
You know the more I learn about Lyme, the less I know. I'm really sick of it, trying to understand something that is way over our heads, something that doctors can care less about, lyme, co infections, viruses, parasites, toxins and everyone arguing over it. The truth is none of us know shit about it, otherwise we'd all be cured, yet here we are sitting here trying our best to figure it out, because the medical community is just ignoring us. Shame on the United States for this. The IDSA/CDC is affecting how the whole world is being treated. Karma sucks..and at this point I have to rely on karma to throw justice at these guys who are causing suffering and torture to millions across the world. It should not be patients trying to sit here, through their own brain fog and sickiness trying to figure this out, it should be the medical community, researchers and all the organizations sworn to help us! This is ridiculous, this whole situation.
Subscribe to:
Posts (Atom)