getting there There are still a few more contributions for you to read here.
Make the best use of them. Try and focus on what positive features they have. Maybe some of them you will want to apply?
120
GETTING THERE
ALLISON CARUANA IS CO-FOUNDER OF THE MAYDAY PROJECT, FORMED BY A GROUP OF VOLUNTEERS WHO HAVE BEEN TOUCHED BY LYME DISEASE.
The Mayday Project Team puts great efforts in advocating for the good of patients. What are the roots of setting up this project? The Mayday Project started with a vision from a group of two Lyme patients and a brother of a Lyme Patient who passed due to the lack of treatment. It was and is still our desire to see that Lyme patients be able to go to their doctor and be able to receive treatment for the life-altering (sometimes life-taking) disease. Is Lyme disease the epidemic of our times? Lyme disease is the New AIDS. This disease is bigger than the government is willing to admit. I have information from the Centers for Disease Control and Prevention (CDC) that admits that the 320,000 cases a year is a more realistic number due to the number of species of borrelia that actually cause Lyme disease. It’s not an epidemic, it’s a pandemic. Within the US there are 10 species of borrelia that
cause Lyme disease, and they refer to it as Borrelia Complex. In your opinion, why is the overall funding for research on Lyme disease so low, compared to other chronic diseases? They know what they are dealing with already. They know it’s not treatable because of the genetic makeup of the bacteria. Why waste the money on researching when the genetic markers B31 (Borrelia burgdorferi B31) and Ca-11.2A (B. burgdorferi CA11.2A cells) tell you it’s incurable. And why is there no reliable diagnostic test for Lyme disease, yet? The CDC is also aware that because of the genetic marker B31, this disease evades the human immune system and has the ability to mutate. Hence, this mutation allows for genetic variants that leave standardizedblood testing unreliable. Some of the only testing that can adequately detect borrelia are PCR’s (polymerase chain reaction) and blood smears.
ALLISON CARUANA – MAYDAY
MAYDAY ADVOCATES FOR ACCURATE TESTS, BETTER GUIDELINES, IMPROVED ACCESS TO TREATMENT, MORE EDUCATION FOR PHYSICIANS, AND INCREASED FUNDING FOR RESEARCH.
121
122
GETTING THERE
I am tempted to ask about the Infectious Diseases Society of America (IDSA). I know that Mayday Project representatives had a chance to speak with the IDSA President. What impact do you think this meeting will have on IDSA's activity? Little to no impact. They are cart, not the horse. We’re now focusing the majority of our attention on the money supply - CDC and National Institutes of Health (NIH). Would you share an honest opinion on the statement which IDSA supports, that "short-term antibiotics proven to be best treatment for patients"? This is a Catch-22. Given the information I gave you above, the fact that the IDSA will not allow for long-term antibiotics makes sense for one reason only… they know it isn’t a cure. However, I can attest to the benefit of long-term antibiotics, as they saved my life. I was diagnosed with Parkinson’s disease and given months to live. After finding out that I had Lyme (which my primary knew for 10 years), then finding a doctor to treat me for three years, I’ve now been in a relatively remissive state now for four years. Mayday Project held a protest at the IDSA’s 2015 annual conference in San Diego in October (2015). What were the most crucial results of it?
We had someone on the inside who was able to hear and see the misinformation that is being touted as “true science”. Our team has already been able to use that information to refute some doctors and their inhumane practices. How important is a positive state of mind in everyday life, and what is your recipe for it? I don’t believe necessarily in a “positive state of mind”, instead I believe in a scripturally sound life. I praise Him in the good times and in the bad. I know that I would not be where I am today without my faith the God would see me and my family through this. Please share a positive thought, quotation, remark related to health or well-being. “Everything happens for a reason”. I am a strong believer in this. It was my saying through this trial. It proved to my kids that they needed to faith in the fact that one way or another, things will work out for the greater good, and it has continuous proven to be true. The Mayday Project is truly making strides to make a significant difference in the treatment of Lyme patients everywhere. One of the key books in the Bible that has been the focus of my advocacy has been the book of Esther, especially Esther 4:14b “And who knows whether you have not come to the kingdom for such a time as this?" I was
ALLISON CARUANA – MAYDAY
diagnosed while studying this, I lived on this verse during the time that my Lyme was active, and I woke up for an unconscious state to this verse. It is my Rhema!
123
rt? y spo n a d ys? owada ctice n a r t p i e er actic ou ev r y p e l v Ha til you s o d And
Have you considered gentle physical activity, such as certain kinds of thai chi, joga and swimming?
Did y ou kn ow th is th at ph e foe ysica l act o f Lyme the s ivity disea light s e e st ef ? Eve to ma fort n ke in y o u a y r o e ur co able an im nditi pact o n o n could your healt make physi h. cal an d men tal
128
GETTING THERE
CHLOE O'NEILL IS FOUNDER OF THE MORE THAN LYME COMMUNITY– THE POWER OF STORY TELLING. BELOW SHE SHARES HER STORY.
The Origin of More Than Lyme Inspiration comes from the core of your being. You can feel it stirring inside of you for years before you decide to take hold of it and make it into something unique, beautiful, and entirely your own. This kind of feeling has stirred inside me since I was a little girl, and though I could feel it, I spent most my time up until nearly a year ago, trying to figure out where to put it. I have always been fiercely independent, and I’ve always known that I’ve wanted to be a part of something more, something bigger than me. So until More Than Lyme, I felt lost, alone, and trapped in the endless pit of fear that can so easily come of this disease. This community has been a turning point for me, before this idea popped into my head I felt alone and scared that one step forward would always end up being two steps back. I felt I had to deal with my Chronic Lyme all on my own, that I was fighting an endless battle without an army. With More Than Lyme underway,
I have found a group of people who are also fighting what seems like a lifelong battle for their health. All these connections have made me realize that a one man army stands no chance against the mile high wall of skeptical doctors and co-infections. But if we take this opportunity to all stand together—to support and help each other grow stronger, then each and every one of us suffering from Lyme will be on our way to a much happier and healthier lifestyle. The Power of Story Telling All in all, I wanted to shine a light on the positives that can come from having a chronic illness, not the negatives. Now, this might sound crazy, but I truly believe that unless we get in tune with our thoughts, make a shift away from the negative, allow our body’s to feel — share how we feel, and create a life for ourself outside of Lyme, that we won’t ever be able to beat this thing. That we wont ever be able to find a cure for this relentless and debilitating disease.
CHLOE: MORE THAN LYME
MORE THAN LYME IS DESIGNED TO RAISE AWARENESS OF LYME DISEASE AND OTHER CHRONIC ILLNESSES THROUGH MUTUAL LOVE FOR ADVENTURE, STORY TELLING, AND THE OUTDOORS.
129
130
GETTING THERE
UNTIL MORE THAN LYME, I FELT LOST, ALONE, AND TRAPPED IN THE ENDLESS PIT OF FEAR THAT CAN SO EASILY COME OF THIS DISEASE.
CHLOE: MORE THAN LYME
The lives and stories that are what make More Than Lyme something worth fighting for. Something worth continuing even when all else feels impossible. Not only that, but they are the main motivation behind this movement. With More Than Lyme I want to cover every side of each story; showing a broad range of people suffering from Lyme that they are not alone, that there is someone else out there going through the same thing they are—getting ready for an adventure, or going to a place that inspires them to keep on keeping on. a sneak peak into the lives of those suffering from Lyme can be an eye opener for not just Lyme patients, but also for those who seek a better understanding of this misunderstood disease. It’s through the power of story that we’ll be able to make a break through in the world of Lyme, after all, with each story told, and each person reached by that story, we are that much closer to finding a cure. Set Backs and Revelations When my symptoms flared up for the fourth time, the list of things I couldn’t do began piling up. Work was out of the question. My diminished eyesight and shaking hands made reading difficult and writing impossible. At first, I felt like I was left with nothing, but soon I started to see more and more of the little things in each day that I could do; being in the outdoors was one of them. Being outside has taught me
131
how to be thankful for what health I have, instead of longing for what I don’t have. Walking the dog became one of my favorite activities, as well as plopping myself down on a blanket in the park where the ducks were kind enough to provide me with endless entertainment. Then eventually, each day I would challenge myself to do more—to venture further away from the safety of my home. This is when I realized just how much more there was to see. And so it began; the adventure bug had been planted. From that moment on I felt much happier and lighter. Even on the days where Lyme kept me in bed, adventuring was always on my mind, giving me even more reason to fight for my health. Where I am Today + Where I Want to be Tomorrow Before Bend, I had been living in Seattle, a very fast-paced city that made my stress levels sky rocket and anxiety flare up. I knew that I needed to get out, fearing that all this stress might lead to a recurrence of my Lyme symptoms. So I made the decision to move to a place that would be a much healthier environment for me to live in, both physically and mentally. My brother had lived in Bend before, so I had already heard all the many reasons why it was so incredible. Perfect size, top-of-the-line coffee, delicious food, and craft beer. the town itself had so many perks but it’s what surrounded it that most intrigued me; high desert, mountains,
CHLOE: MORE THAN LYME
and crystal clear rivers—the perfect place for endless opportunity and adventure. It’s been nearly two years since I moved here, and I have to say the opportunities for adventure still feel endless. Not only that, but it has healed me in more ways than one. So even though I still very much feel Lyme’s presence in my day-to-day, I have so much hope for what tomorrow will bring, and I find myself focusing less and less on the negative and more and more on the positives, the opportunities, and the all the little adventures that my life has yet to show me. The Truth I want us to live a life where both feet are in the world of hope instead of fear. Where we are more so defined by how we deal with suffering, hardship, and pain, instead of the suffering itself. I want us to lead with our truest selves, not Lyme. I want us to lead with hope, with confidence, and with an endlessly adventurous spirit; a life more than anything and everything you ever doubted or thought you couldn't be. So go ahead, make time to create a day that is your very own. Even if it’s just breaking outside of your normal routine, every part of your day can be a new and exciting experience. Never limit yourself because you think that “Chronic Lyme” is written across your forehead. Adventures will motivate and encourage you to be your best self, to never give up when
133
it all seems impossible. You will get to the top of that hill, just like you will feel like yourself again.
RUN THE MOST RAPIDLY SPREADING VECTORBORNE DISEASE IN THE WORLD Data comes from: • “The Spread of Lyme Disease” by Ernie Murakami, MD Clinical Professor Emeritus, UBC BA Immunology & Bacteriology, murakamicentreforlyme.org • borelioza.gazetka.eu
um
i lg
16
1.1
13
0,115
36
21
24 16
25
12 6
12
Incidence of Lyme disease per 100000 population – 2005
16
11.6 7
s y a a ic in ay and ce ny ria ada nd nd ki ni te ar bl a n a a w a a l l l o g ir ta lga a u n r t t v m n S o ot Fr un Po Slo Fi Es er Ca Rep N d tB Be Bu H Sc G a e t e h r ni ec G U z C
0
5
10
15
20
30 25
35
40
2000s
EUROSURVEILLANCE GLOBAL INCIDENCE OF LYME
1920s
In epidemiology, a vector is any agent (person, animal, or microorganism) that carries and transmits an infectious pathogen into another living organism.
SPREAD OF LYME THE VECTOR-BORNE DISEASE
The data of chosen geographical regions of Poland concerning the number of new infections with Lyme disease by year: in 2005 - 4409, in 2006 6694, in 2007 - 7735, by the end of 2008 -7808 new cases. The official statistics note about 9-10 cases of infection among 100.000 inhabitants, however according to the PZH (National Hygine
Lyme disease is the most rapidly spreading vectorborne disease in the world. the medical world is divided, with one group saying it is rare, easy to diagnose, and easy to treat; and the other saying it is a difficult diagnosis because of the negativity of the ELISA test and the lack of medical education of medical students, family, practitioners and specialists.
Institute), the data may be decreased even 10 times, in comparison of Poland to the neighbouring countries. Not long ago, it was said that 10-12 ticks infect with Lyme disease, however, nowadays, it may even be one third of these insects. The decreased data is a result of the disease is not always registered where it should be. Thus, there are no reliable statistics available. The percentage of infected tics may even equal 60% in some Polish regions.
THE DIVISION
144
GETTING THERE
SCOTT FORSGREN IS A BLOGGER, HEALTH WRITER, ADVOCATE, AND COACH. HE IS THE EDITOR AND FOUNDER OF THE WEBSITE BETTERHEALTHGUY.COM
On your website: you list health conditions that you have been told you may have had over the time you were being diagnosed with. They include: mononucleosis, Chronic Fatigue Syndrome (CFS/CFIDS), Fibromyalgia (FMS), Multiple Sclerosis (MS), etc. Misdiagnosis is a common problem that many chronically ill people face daily. What piece of advice would you give to a person suffering from a chronic disease? Fortunately, there is a lot more information available today than there was when I got sick almost 20 years ago. If someone had symptoms similar to mine, I would find a doctor either through International Lyme and Associated Diseases Society (ILADS) that understands Lyme and related microbial and toxic co-factors or a good functional medicine doctor through an organization such as ACAM (American College for Advancement in Medicine, www.acam.org) or IFM (The Institute For Functional Medicine, functionalmedicine.org). Personally, I found energetic medicine to hold many
of the answers. Working with a doctor that uses energetic testing in their work can be a very helpful guide. This may be a form of muscle testing such as ART (Autonomic Response Testing from Dr. Dietrich Klinghardt MD PhD) or various computer-based systems commonly referred to as EAV (Electro Acupuncture According to Voll) or EDS (Electrodermal Screening). I found these tools to be immensely helpful. in fact, it was a practitioner doing EAV that first suggested Lyme as a possibility, and that was a game changer in my journey back to health. Why do you think, the health care industry nowadays often puts money before ethics? I'm not sure this phenomenon is isolated to health care. The food industry seems to do the same thing. Many politicians often seem to fall into similar traps. Sadly, ethics don't pay the bills or put food on the table. I read that you credit Dr. Klinghardt "with being the guide that has led you
SCOTT FORSGREN – BETTER HEALTH GUY
THROUGH BETTERHEALTHGUY SCOTT SHARES HIS 19-YEAR JOURNEY THROUGH THE WORLD OF LYME DISEASE AND THE MYRIAD OF FACTORS THAT IT OFTEN ENTAILS.
145
146
GETTING THERE
back to a good state of health". in reference to Dr. Klinghardt's succesful treatment methods and protocols, I wish to ask you to give your opinion on the harmful effects that the electromagnetic smog (EMF) has on our health. My understanding of many things over the years came from my work with Dr. Klinghardt and the impacts of EMFs is one of those. EMFs have been shown to be harmful to the body in many ways and are an additional stress that can be a factor in chronic illness. He has spoken about the impact of EMFs on molds and how they produce significantly more biotoxins when threatened by electromagnetic fields. These toxins then impact our health. There are often many things that have gone wrong in someone with chronic illness, and EMFs is one of these. It's more significant for some than for others. My observation has been that it can be a more significant issue in those that are heavy metal toxic; which sadly is very common. How would you encourage people to consider the so-called alternative, or complimentary treatments for Lyme disease? With Lyme, we need a big toolbox. No one thing works for everyone. Often, people start with more conventional treatment options and ultimately move to more integrative or alternative options. I found many of the best treatments were not
the conventional ones, and yet, I did have some initial benefit from antibiotics. Thus, I think we have to have an open mind to the many possible tools that are available. Please number 3 foods that you think everyone should eat daily, for the sake of boosting their health. This isn't really possible. Everyone is unique and there are no three foods that everyone should eat daily. More likely, there are foods that should be avoided and high on the list would be gluten, cow dairy, corn, soy, and other foods that one may be sensitive to such as nightshades. What is your recipe for staying healthy and in a positive state of mind daily? Today, my focus continues to be on detoxification. I also am vigilant about ensuring that the environment around me is as safe as possible; especially when it comes to mold exposure which was another significant part of my journey. While I don't consider Lyme to be an issue for me anymore, I do still remain on a maintenance protocol to support my body in remaining in a good place and continuing to address any remaining microbial or toxic burden that may still be present. Unfortunately, we are exposed to so many environmental toxins on a daily basis that you can't just stop working on staying healthy. A healthy diet and stress reduction are also important
SCOTT FORSGREN – BETTER HEALTH GUY
parts of my ongoing focus. I am so grateful for how far I have come and that gratitude helps me to stay positive. Please share a positive thought, quotation, remark related to health or well-being. "Lyme disease is a messenger for many of us and the process of going through it is life changing. While it is
147
the biggest challenge many will ever face, something beautiful often happens as a result of the experience."
right to e h t n o e c a p use the s elf. s r u yo ith w w ie terv n i n do a h ons you wis i t s e u q e h t think of to ask yourself. should they be related t o your past, future , or maybe
t?
esen the pr
use your imagination ward
ightfor and be stra
in your answe rs!
video interview what did you always want to ask a friend of a chronically ill person? scan the portrait on the left to watch the “question box” interview
if you can't remember Ar instructions, take a look at them again.