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. 

I guess what it always comes down to, and people always hate when I say that we need more research.... to figure out what this crap is. What the name or it is, I dont care, Lyme Disease or whatever. The fact is there are millions of people who are sick and we need to help them and get this figured out for future generations so that they dont suffer.

On my other website,, 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" 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

Symptom Chart

Cause Chart


  1. I think you have it figured out in a nutshell. No matter what the pathogen or straw that broke our backs, we are "invisibly" sick, no markers or proof to our ills really, and we need to strive for more awareness no MATTER WHAT. More people are getting ill and soon will be tens of millions or more...and making ourselves heard will get more support. Hopefully beFORE the next generations will become sick. I can't even imagine if this keeps exploding exponentially what our Earth will be like with such diseased populations. I think much is the stressful environment we live in: foods, medications or vaccines, pollution. And medicine being about tossing pharmaceuticals our way and not fixing the root of the problems. Some day it will have to change...or we will cease to exist. So glad you advocate Lisa, even if we do not know what it is we are fighting, the fight is still worth it to win the war on poor health in our country. <3 you!

  2. Well said, Lisa! Long story short, the body is out of balance and to feel good again the balance has to be realigned. The complicated part is it is out of balance on so many levels and until you address them all...there can be no true balance.

    Or at least that has been my experience which has proven to be pretty accurate since I have pieced together most of my broken puzzle and can live again!

    Hugs to you!

  3. A good article. I especially appreciate the comparitive charts.

  4. I agree with much that Lisa says. As for research, the truth is that the "scientific" community, ie university and hospital affliiated researchers are all caught in the same crazy paradigm as the rest of mainstream medicine. Lyme disease, and most of these chronic diseases, are holistic diseases in that many bodily functions are affected, many organs, and the disease varies over time in a non-linear way. There is even a psychological/spiritual aspect. These diseases can't be cured by antibiotics or other pharmaceuticals and more research is not going to find a cure. So only holistic medicine can hope to help, and there is very little research in this field.
    The ultimate key I believe is in trying to rebuild health and immunity. Although it pains me to say this I think most of us will never be cured but can only hope to mange the disease. Mainstream medicine mainly makes us worse because every pharmaceutical drug has side effects that undermine the immune system.

    1. I tend to agree with you french girl. :( And it makes me sad because where do we turn? I guess you are right and we all need to focus on what WE can do ourselves. Like you said, there is also a spiritual aspect to this, it is definilty lesson for our souls, what we are gonig through and we have to overcome more then just a spirochete to be functional again.

  5. Hi there! I have a quick question when you have a free moment! Hope to hear from you soon :-) hvsj12 AT gmail DOT com

  6. Hello, nice blog thx for your sharing :) I'm finding that over and over that it is actually Lyme activists themselves, who are perhaps unknowingly making the CDC's point re Lyme/Post Lyme. All the $$$ wasted going to LLMDs etc.......doesn't work, like you said.....I agree the "herx" is overused, half the times its side effects of the antibiotics themselves. In fact the true def of herx is a 1 time reaction or die off from over kill of bacterial load.
    as for needing more "unbiased research" definition evidenced based medicine is unbiased, that's why it"s based on facts, statistics, clinical studies, not hypothesis. It has to be peer reviewed to even get published, and later if new facts present, it gets isn't stagnant.
    Many Lyme suffers don't even realize that the updated CDC Lyme guidelines were done by a totally unbiased group (due to the whole Blumenthal involvement,) Any doc who makes over $10,000 treating Lyme was not allowed on the panel to rule out bias.....this is why there were NO LLMDs on that panel....not because the CDC is close minded.
    I got Lyme and 2 co infections Aug 2012 and treated w abx for 1 yr and I've been off them now for 1 yr. I've read all the research and studies, I think advocates would serve the Lyme mission if they did more of the later. I guess you could say I stand in the middle of the debate.