A Invisible illness is a illness that you have that can’t be seen, MS, SJorden’s, Cluster headaches, migraine headaches, gastroparesis, Huntington’s disease ,fibromyalgia,chronic fatigue, lupus,reflex sympathetic Dystrophy, Myalgic Encephalomuelitis, Crohn’s disease, cystic fibrosis, RA, Prinz Metals Variant Arigina, Asthma, Hypogamma-globulinemia, PTSD, concussion, post concussion syndrome, Hep C, Chronic Back injury, Diabetes, cancer, autonomic neuropathy, autonomic small tissue neuropathy, autonomic dysfunction, Autoimmune disease of the inner ear, AIED, Menieres, So many there isn’t enough pages to list all the invisible illnesses.
The key to Invisible Illness is yet the hardest thing to do is diagnose a invisible illness, but the sooner you get diagnosis, get the right treatment, most invisible illnesses don’t have a cure. just comfort measures.
I have a invisible illness, several to be exact and I can tell you the hardest thing is having to defend your illness to everyone, they don’t believe you, they think you are doing it for attention. Believe me I would do anything to have my old life back, be able to work, go for a walk, hike, go have vacations, go to the mail box, walk in a line, Sleep! Sleep is so important and as a patient with invisible illnesses, I feel like I can sleep all the time, my brain is working on over time every day, just to get out of bed, just to do my hair..
I call it payback, if I go do something fun, the energy it takes to get ready and get somewhere be normal for a few minutes and then go home and crash, the pay back! the more stress the more pay back. It can take hours to get ready just for a simple dinner but I can sleep 14 hours after. Any Dr appointments wipe me out, specially if testing is to be done. So I plan. everything has to be planned, If I can make dinner I have to make it early so I am not sleeping when it’s dinner time, If I clean up the laundry room, I have to sleep after, I will do 1 load of laundry and pay.
When you have to defend your illness, its hurts inside, when your family doesn’t believe you it breaks your heart, your always on the defense. Your friends disappear, family disappears whether its because they can’t handle it or because they don’t want to. That’s the killer. You become the scape goat for family issues because your crazy. Its a awful place to be, your not only alone but your alone with your disease, not knowing what tomorrow may bring or if tomorrow will come or if you even want it to. Having a invisible illness F g sucks! more bad days than good, never being able to make plans.
So If you take anything from this post today is we are telling the truth, we are sick, we need your support not your drama. We don’t need to explain our illness or defend it and if you can’t be supportive then let the person go. Just be honest, Just tell the person, write them a letter, e mail them, so they don’t have a false representation of what your intentions are. That’s kinder to a person than to hang on and be a fake friend. Or family member. Every Dr that I talk to says the same thing, the hardest thing is the lack of support from family and friends and there not believed. Those are the words of the Doctors, it’s the highest complaint. Very Sad, that amongst the illness we don’t get the recognition that we are even sick let alone support from the people in your life. So if you are a family member of someone with invisible illnesses, learn about the disease, learn how you can help, not behind the patients back but from the patient “What will make your life easier”? Its not science, it doesn’t cost you anything, but be there! Remember we all die some day, some have a longer illness or life than others, so instead of nit picking, being abusive verbally, be supportive. Nothing hurts worse then being sick alone.
Positive Thinking Doesn’t Work – Positive Action Does
Mind over Meniere’s via mail88.atl11.rsgsv.net
May 26 (8 days ago)
Positive Thinking Doesn’t Work – Positive Action Does
Living with chronic illness is hard in the age of the 24-hour news cycle.
The never ending circus of tragedy, crisis, and fear is hard to avoid. Somehow, we’ve decided that the darkest aspects of humanity are what want to see, and all the time.
It finds us on Facebook and Twitter, where the celebrities we follow, and our family and friends, parrot the fear.
We’ve never been more connected, but so many people just use that connection to spread negativity. You see it on social media, in the comments on YouTube, and on blog posts and articles. Everyone’s a critic now.
It’s way too easy to see the world as a depressing place because, from a lot of angles, it is. But it’s also beautiful, and finding a sense of happiness is so important, especially when you have a chronic illness.
I believe in the power of positive thinking, but I also know it’s not practical advice. Happiness and positivity require positive action.
“Action may not always bring happiness, but there is no happiness without action.” – Benjamin Disraeli
So today, I offer you a set of actions that can help boost your happiness. It is possible to live well with chronic illness; it just takes a bit more work.
1) Avoid the news:
While I don’t believe you have to practice positive thinking, you should make an effort to avoid negativity.
The news today is like a fire hose of sadness. It’s a constant barrage of negativity, hopelessness, and despair, without ever offering any solution. Every now and then we’ll see a positive piece thrown in for good measure but the overall trend is unmistakable, and it’s impacting you whether you realize it or not.
“News is to the mind what sugar is to the body.” – Rolf Dobelli
Just imagine what your life might look like if it was the opposite were true. If 99% of the news covered the triumph of the human spirit, our capacity to help others, and our greatest achievements, while only 1% was negative. I know I would be a happier person.
And while it may not be possible to avoid negativity altogether, you can get half way there by choosing to avoid the news. If anything truly important ever happens, you can be sure you’ll hear about it, one way or another.
2) Listen to something inspiring:
It’s important to cut out the negative content you consume, but you will also probably need something to replace it. It’s good then that we have more choices than we’ve ever had before.
The internet has given us access to an unfathomably large new source of information, content, and entertainment. Streaming services like Netflix, YouTube, and Amazon, have changed the way we watch TV, giving us access to the shows we want when we want. But in my opinion nothing is more powerful than audio entertainment, and we happen to be in a golden age of audio.
The internet has not only breathed new life into audiobooks but has also created the opportunity for anyone to have a radio show, called a podcast, that can reach millions of people. Over the last few years, podcasts have exploded in popularity, quality, and quantity, and there is now something for everyone.
Audio is so powerful because it forces you into the present moment, holding your focus and attention, as it activates your imagination. I find that listening to an inspiring story, audiobook, or interview, works wonders on my mental state when I’m struggling with Meniere’s disease.
Some of my current favorite podcasts:
This American Life – The most popular podcast in the US. Highly produced radio documentaries featuring inspiring storytelling on a new theme each week.
Radio Lab – “Radiolab is a show about curiosity. Where sound illuminates ideas, and the boundaries blur between science, philosophy, and human experience.”
Serial – “Serial tells one story—a true story—over the course of a season.” I highly recommend season one. It’s fantastic!
The Tim Ferriss Show – An interview show where Tim deconstructs top-performers in a wide variety of fields to extract the tools, techniques, and routines they use to be so successful.
Reply All – An amazing storytelling show about the weird world of the internet.
Audiobooks: You can use this special link to get 2 free books on Audible (it’s part of Amazon.) You have to sign up for the 30-day free trial of their paid subscription service, but you get to keep the books, even if you cancel before the 30 days are up!
3) Surround yourself with positive people:
We may not get to choose our family, but we can choose to spend time with the right people.
The motivational speaker Jim Rohn used to say, “You are the average of the five people you spend the most time with.” Who are the five people closest to you? Do they support you and your ideas? Do they make you laugh? When you are with them, do you feel like you matter? Or do some of them drain energy, and fill your life with constant and unnecessary drama?
“Let go of the people who dull your shine, poison your spirit, and bring you drama. Cancel your subscription to their issues.” – Dr. Steve Maraboli
Living with a chronic illness is hard enough. You don’t need the added headache of emotionally toxic people. You deserve to be supported, loved, and inspired, and you have a say in whether that happens or not.
Keep the people who truly care, who motivate and uplift you, close to you, and try to spend less time with anyone who brings you down.
4) Hand write a thank you card to someone you love:
If you are already lucky enough to have positive and supportive people in your life, let them know how much they mean to you.
There is something deeply personal about hand writing a sincere and heartfelt thank you note to someone special. It’s such a simple act and one that can have such profound impact on your personal happiness.
“It is not happy people who are thankful. It is thankful people who are happy.” – Unknown
First are foremost, you will strengthen your relationship with that person. Let them know that you care about them, and that having them in your life makes a difference.
It’s also a great way to practice gratitude. When you live with a chronic illness, it’s very easy to get caught up in self-pity and resentment. You may be limited in what you are physically able to do, and that can be hard to accept. But hand writing a heartfelt letter forces you to find and focus on something positive, someone you are grateful for, and gives you the opportunity to express it to them directly.
I challenge every single one of you to hand write and send a thank you card to someone important in your life today. It’s such a simple thing to do, and it will immediately put you in a better mood.
5) Do what you can to help others:
When you live with a chronic illness, you are predisposed to hardship, adversity, and pain. Suffering is usually a part of the deal. But you can alleviate your own pain and suffering, by alleviating the suffering of others. There is nothing in this world that does more to raise the human spirit, than helping others in need.
“Life’s most persistent and urgent question is, ‘What are you doing for others?'”- Dr. Martin Luther King Jr.
Helping others can be as simple as being there to listen to someone in need. You may not be able to solve their problems, but you can be the one to understand their pain.
You can share your story with others, to inspire, or teach, or to help people avoid the same mistakes that you’ve made. You can start a blog for free at wordpress.com, or even just leave a comment on this page. Starting Mind Over Meniere’s has been one of the most rewarding decisions I’ve ever made.
“No one is useless in this world who lightens the burdens of another.” – Charles Dickens
You can also volunteer your time for a charity that means something to you, helping them make a difference by spreading the word, raising money, or doing whatever it is that you can to help the cause. Volunteering for the Vestibular Disorders Association has been a wonderfully rewarding experience for me, and one that I recommend highly.
6) Achieve a small win:
When you live with a chronic illness, odds are, you are going to have difficult days. And it’s hard to feel positive when you’re too sick to accomplish anything important, or anything at all for that matter.
But even on our worst days, it’s rare to be completely incapacitated the entire time. One of the best things you can do is focus on achieving a small win.
What this involves, exactly, is going to be different for everyone. But you can always make the choice to take some small action, to achieve some small obtainable victory, and it can make all the difference.
“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” – Carmen Ambrosio
For me, that might mean going for a walk when I don’t feel like leaving the house, or meditating if I’m too fatigued. It could mean eating a something healthy when all I want is comfort food. Sometimes, if I’m working on a book or a blog post, it means just writing a couple of sentences. More of the time, however, it means allowing myself to rest without feeling lazy or guilty.
Whatever small win is within your reach today, take it. It will make you feel better.
You don’t have to practice positive thinking to be a positive person. It can help, sure. But nothing beats positive action. The things you choose to do make just as much, if not more of an impact, than how you choose to think. And when you act first, the mindset follows.
“The measure of who we are is what we do with what we have.” – Vince Lombardi
I hope you will give some of these suggestions a try. You didn’t choose to live with a chronic illness, but you can choose what you’ll do next. I hope you choose something positive.
Written by Mind over Meniers.
Missing link found between brain, immune system — with major disease implications
Implications profound for neurological diseases from autism to Alzheimer’s to multiple sclerosis
Credit: University of Virginia Health System
Vessels directly connecting brain, lymphatic system exist despite decades of doctrine that they don’t
Finding may have substantial implications for major neurological diseases
Game-changing discovery opens new areas of research, transforms existing ones
Major gap in understanding of the human body revealed
‘They’ll have to change the textbooks’
CHARLOTTESVILLE, Va., June 1, 2015 – In a stunning discovery that overturns decades of textbook teaching, researchers at the University of Virginia School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist. That such vessels could have escaped detection when the lymphatic system has been so thoroughly mapped throughout the body is surprising on its own, but the true significance of the discovery lies in the effects it could have on the study and treatment of neurological diseases ranging from autism to Alzheimer’s disease to multiple sclerosis.
“Instead of asking, ‘How do we study the immune response of the brain?’ ‘Why do multiple sclerosis patients have the immune attacks?’ now we can approach this mechanistically. Because the brain is like every other tissue connected to the peripheral immune system through meningeal lymphatic vessels,” said Jonathan Kipnis, PhD, professor in the UVA Department of Neuroscience and director of UVA’s Center for Brain Immunology and Glia (BIG). “It changes entirely the way we perceive the neuro-immune interaction. We always perceived it before as something esoteric that can’t be studied. But now we can ask mechanistic questions.”
“We believe that for every neurological disease that has an immune component to it, these vessels may play a major role,” Kipnis said. “Hard to imagine that these vessels would not be involved in a [neurological] disease with an immune component.”
New Discovery in Human Body
Kevin Lee, PhD, chairman of the UVA Department of Neuroscience, described his reaction to the discovery by Kipnis’ lab: “The first time these guys showed me the basic result, I just said one sentence: ‘They’ll have to change the textbooks.’ There has never been a lymphatic system for the central nervous system, and it was very clear from that first singular observation – and they’ve done many studies since then to bolster the finding – that it will fundamentally change the way people look at the central nervous system’s relationship with the immune system.”
Even Kipnis was skeptical initially. “I really did not believe there are structures in the body that we are not aware of. I thought the body was mapped,” he said. “I thought that these discoveries ended somewhere around the middle of the last century. But apparently they have not.”
‘Very Well Hidden’
The discovery was made possible by the work of Antoine Louveau, PhD, a postdoctoral fellow in Kipnis’ lab. The vessels were detected after Louveau developed a method to mount a mouse’s meninges – the membranes covering the brain – on a single slide so that they could be examined as a whole. “It was fairly easy, actually,” he said. “There was one trick: We fixed the meninges within the skullcap, so that the tissue is secured in its physiological condition, and then we dissected it. If we had done it the other way around, it wouldn’t have worked.”
After noticing vessel-like patterns in the distribution of immune cells on his slides, he tested for lymphatic vessels and there they were. The impossible existed. The soft-spoken Louveau recalled the moment: “I called Jony [Kipnis] to the microscope and I said, ‘I think we have something.'”
As to how the brain’s lymphatic vessels managed to escape notice all this time, Kipnis described them as “very well hidden” and noted that they follow a major blood vessel down into the sinuses, an area difficult to image. “It’s so close to the blood vessel, you just miss it,” he said. “If you don’t know what you’re after, you just miss it.”
“Live imaging of these vessels was crucial to demonstrate their function, and it would not be possible without collaboration with Tajie Harris,” Kipnis noted. Harris, a PhD, is an assistant professor of neuroscience and a member of the BIG center. Kipnis also saluted the “phenomenal” surgical skills of Igor Smirnov, a research associate in the Kipnis lab whose work was critical to the imaging success of the study.
Alzheimer’s, Autism, MS and Beyond
The unexpected presence of the lymphatic vessels raises a tremendous number of questions that now need answers, both about the workings of the brain and the diseases that plague it. For example, take Alzheimer’s disease. “In Alzheimer’s, there are accumulations of big protein chunks in the brain,” Kipnis said. “We think they may be accumulating in the brain because they’re not being efficiently removed by these vessels.” He noted that the vessels look different with age, so the role they play in aging is another avenue to explore. And there’s an enormous array of other neurological diseases, from autism to multiple sclerosis, that must be reconsidered in light of the presence of something science insisted did not exist.
Published in Nature
The findings have been published online by the prestigious journal Nature and will appear in a forthcoming print edition. The article was authored by Louveau, Smirnov, Timothy J. Keyes, Jacob D. Eccles, Sherin J. Rouhani, J. David Peske, Noel C. Derecki, David Castle, James W. Mandell, Lee, Harris and Kipnis.
The study was funded by National Institutes of Health grants R01AG034113 and R01NS061973. Louveau was a fellow of Fondation pour la Recherche Medicale.
Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.
What is an Invisible Disability?
Invisible Disabilities Association – InvisibleDisabilities.org
By Guest Blogger Wayne Connell, Founder, Invisible Disabilities Association
What is an “invisible disability?” Is it a specific illness or condition, such as multiple sclerosis, fibromyalgia, bipolar disorder, diabetes, a Chiari malformation or syringomyelia? Is it the symptoms of an illness or disability, such as pain or fatigue or neuropathy or brain fog? Why do we even use the phrase or where did it come from? Isn’t a disability just a disability, no matter if you can see it or not? Are people treated differently because their disability manifests itself visibly? Is having a disability different from being disabled? All great questions! Is someone, who has an illness or is in pain or has a disability or is disabled, a bad person who should be treated like a lesser human? I can answer that one. NO!
Twenty years ago in 1996, my wife, Sherri, coined the term “invisible disability.” Why did she come up with it? After receiving a diagnosis of primary progressive multiple sclerosis and chronic late stage Lyme disease in 1991, at the young age of 27, Sherri endured the stares and accusations and disbelief of strangers and friends that questioned how she could be disabled and still walk with seemingly unapparent outward signs of her disabilities. People would often scream at her when she parked in an accessible space or ignore her when she collapsed on the floor of a department store. So the phrase, “I have an invisible disability,” became an apt description of what she was living with.
As a tech guy, I decided to use some of Sherri’s pamphlets she wrote to help friends and family better understand what she was going through such as “Multiple What? Untangling the Perplexities of Multiple Sclerosis” and “Don’t Judge by Appearances – Parking with Invisible Disabilities” and created the InvisibleDisabilities.org website. That is when The Invisible Disabilities Advocate® was launched (which became the Invisible Disabilities® Association (IDA)). Almost immediately, 25,000 people a month started coming to IDA’s website and said that we put into words what they had been trying to tell their friends and families. “Invisible disabilities” progressed from a very descriptive term to an international organization and movement.
Of course, the question most-asked of our organization is, “what is an ‘invisible disability?’” In general, the term “disability” is often used to describe an ongoing physical challenge. This could be a bump in life that can be well-managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness and value, no matter what hurdles they may face.
In addition, just because a person has a disability does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.
According to the Americans with Disabilities Act of 1990 (ADA), an individual with a disability is a person who: has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.
Furthermore, “A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults).”
Often people think the term “disability” only refers to people using a wheelchair or walker. On the contrary, the 1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost one in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker. In other words, 74 percent of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment.
The term “invisible disability” refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.
Also, someone who has a visible impairment or uses an assistive device such as a wheelchair, walker or cane can also have an invisible disability. For example, whether or not a person utilizes an assistive device, if they are debilitated by such symptoms as described above, they live with an invisible disability.
Unfortunately, people often judge others by what they see and often conclude a person can or cannot do something by the way they look. This can be equally frustrating for those who may appear unable, but are perfectly capable, as well as those who appear able, but are not.
International Disability expert Joni Eareckson Tada explained it well when she told someone living with debilitating fatigue, “people have such high expectations of folks like you [with invisible disabilities], like, ‘come on, get your act together.’ But they have such low expectations of folks like me in wheelchairs, as though it’s expected that we can’t do much.”
The bottom line is that everyone with a disability is different, with varying challenges and needs, as well as abilities and attributes. Thus, we all should learn to listen with our ears, instead of judging with our eyes.
At the Invisible Disabilities® Association, we do not maintain a list of specific illnesses and diagnoses that are considered invisible disabilities. There are thousands of illnesses, disorders, diseases, dysfunctions, genetic defects, impairments and injuries that can be debilitating. Therefore, all conditions that are debilitating are included when we talk about invisible disabilities. However, our focus is not to attempt to provide a vast amount of information about thousands of specific conditions (there are plenty of amazing organizations that do that).
IDA is here to provide awareness, education, connection and support for everyone who lives with a debilitating condition. We do this by offering articles, pamphlets, books, resources, radio interviews, video, seminars, symposiums and more to give hope and compassion to all living with invisible disabilities as well as information for loved ones to better understand.
IDA’s mission is to encourage, educate and connect people and organizations touched by illness, pain and disability around the globe. Hard to believe it has been twenty years yet there is still so much more work to do. Will you join us on this journey and envision a world where people living with illness, pain and disability will be Invisible No More®?
About the Guest Blogger
Wayne Connell, the founder and president of the Invisible Disabilities® Association (IDA), established IDA twenty years ago in 1996 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the book, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities.
Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv. You can also be part of other people’s stories by joining them at www.Facebook.com/invisibledisabilities or becoming a member of InvisibleDisabilities.Inspire.com. Join IDA at our 2nd annual Brain IDEAS Symposium on August 5th. Invisible Disabilities Week is Oct 16 through 22, 2016. Our 9th Annual Awards Gala, “Jazzed About You” will be Octob
25 Secrets of People With Chronic Illnesses
Elisabeth Brentano By Elisabeth Brentano Feb 11, 2016
This article discusses aGeneral topic in our community
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Nearly 133 million Americans have some sort of chronic illness, and that number is expected to reach 157 million by 2020, according to data on the Invisible Illness Week website.
From exhaustion to migraines to fatigue, many chronic illness symptoms aren’t visible to the naked eye, which makes them even more difficult to diagnose — and understand.
With a growing number of people affected by chronic illnesses like fibromyalgia, arthritis, Lyme disease, Crohn’s disease and diabetes and more, it’s important to both raise awareness and let others know how to respond to the needs of individuals living with these conditions.
So we asked readers in our Facebook community what truths about chronic illness they wish others understood. Here’s what they had to say:
1. “Some days you can function, some you can’t.” —Amber Wandmaker
Woman on beach
2. “I’m not lazy. I’m in pain, exhausted and quite possibly depressed because I feel useless and cannot make others understand what I go through on a daily basis.” —Jodie Farber Brubacher
3. “It’s not in my head.” —Christine Olson Smith
Writing on notepad
4. “When I’m pushing through… I’m really pushing myself too hard.” —Debra Declue
5. “Just because you can’t see it doesn’t mean it’s not real.” —Rhonda Miller-Solomon
Magnifying glass, close-up, cropped
6. “Accepting the fact that I will never get better is what has allowed me to live my life and continue to work towards my goals without waiting to ‘get better.’” —Joan Elizabeth
7. “A good day for people with chronic pain… is often just ‘less of a bad day.’” —Ann Webb Bradford
8. “Being immune compromised/suppressed isn’t a game; it’s dangerous. When I say I can’t get sick, I’m not being paranoid; I’m being careful. Life’s no good when you’re dead!” —Arianna Nyswonger
9. “I’ve become an expert on hiding my pain from everyone.” —Beth Cox Harrell
Woman looking through blinds
10. “Chronic illness often comes in multiple versions; treating one can mean making another one worse.” —Zoann Murphy
11. “I can’t remember what ‘well’ feels like.” —Sandra Williams
12. “Good can change to bad in a matter of minutes. There are good days and bad days, but there are also good hours and bad hours, good minutes and bad minutes. Chronic illness does not see or understand time.” —Deanna Guarino-Embry
Clock on wall
13. “There’s no such thing as ‘too young;’ we can’t just show out bodies ID and tell the illness to come back in 10-20 years!” —Jen Andrew
14. “It doesn’t get better. It is this way. Every day. Forever. If you’re in my life, please don’t ask me if I’m feeling ‘better’ today.” —Wendy Rose
Old man feeling sick
15. “We shouldn’t be treated like drug addicts or hypochondriacs and denied the care we truly need.” —Amy Brandborg
16. “I live a double life. What you see when I am at work: someone who is well put together, always dependable, smiling, will always tell you she is doing fine. My reality: I’m a mess, in so much pain, my smiles are forced, sometimes I have to find a quiet place to cry. But it’s much easier for me to fake it because coworkers don’t want to hear my truth day after day.” —Amber Weller
Woman in front of mirror
17. “A ‘good attitude’ doesn’t take away pain or improve mobility. I am still human and I will have days when I just can’t drum up that ‘good attitude.’” —Vicki Gomes Petilli
Woman standing in field barefoot
18. “I didn’t do this to myself. I didn’t not pray hard enough or believe hard enough. I didn’t not eat well enough or not exercise enough.” —Barb Silvestro
19. “It hurts to be forgotten because we have said no to so many events, parties, family gatherings, shopping trips, etc. I want them to still ask just so I know they are still thinking of me.” —Victoria Sinclair
Upset woman with grey hair
20. “There is no magic cure. I don’t want to be sick, but this is my reality. I can’t wish it away or cleanse it away or take supplements because your sister’s boyfriend’s mother did.” —Christina Marroquin-Mauricio
Spoon with heart in it
21. “People don’t choose to feel horrible every day and lose the person they used to be.” –Caitlin Hoechst
22. “What I can do one day I might not be able to do the next.” —Becky Rider
23. “I’m not making it up. If I wanted to fake an illness, I would choose something that people would believe!” —Faith Merryn
24. “My downtime doesn’t mean I’m depressed or isolating. It’s a time for me to heal and recharge.” —Kate Wilhelmi
25. “My illness does not define me, my dreams or who I am!” —Judy Fox Berryan
Woman on the beach
What’s one truth about chronic illness you wish others understood? Let us know in the comments below. And be sure to visit our new Facebook page, Chronic Illness on The Mighty.
All images via ThinkStock
The Medical Medium—and What’s Potentially at the Root of Medical Mysteries
In the forward to the new book, Medical Medium, Dr. Alejandro Junger writes, “As a man of science, I have been taught to the point of indoctrination that I must only trust what I can observe, measure, test, and reproduce.” But Dr. Junger then goes on to explain his career-long fascination with healers—those who can bring sight back through touch, or restore the mysteriously ailing to health. Sure, it sounds really out there, but one of the reasons we lean on Dr. Junger so heavily over here at goop is because he’s always willing to question the status quo—and to acknowledge that he might not have all the answers.
One of the unlikely places where Dr. Junger has found surprising—and according to him, spot-on—answers is from Anthony William, a self-titled Medical Medium, who has heard a force he calls Spirit in his ear since he was a toddler. As he recounts in his book, the vision of a man appeared at the dinner table one night when he was four-years-old and beckoned him to stand in front of his grandmother, put his hand on her chest, and say “lung cancer.” Plagued by curiosity, his parents took his grandmother to the doctor a few weeks later, and sure enough, she had a late stage lung cancer that had metastasized. And according to William, Spirit—though not visibly present—has been with him ever since.
William has a robust business—apparently the waiting list is years-long, half of his clients are doctors looking for advice on behalf of incurable patients, and he attends to callers by lottery—but he’s now put some of his foundational knowledge into a book, which he’s quick to point out has absolutely nothing in the way of medical study footnotes or citations. As he explains, “It’s all new.” The focus is on “mystery illnesses,” i.e., a group of diseases that many physicians have been quick to dismiss as psychosomatic—and which primarily affect women—including chronic fatigue syndrome, fibromyalgia, multiple sclerosis, Lyme disease, rheumatoid arthritis, Hashimoto’s, and Epstein-Barr virus. (More on EBV below.)
The book is a fascinating read, whether plausible or not. His personal story is compelling, and his discussion of disease and disease states is really interesting, even if you’re not personally affected. Below, you’ll find a chapter about Epstein-Barr Virus from William’s new book, Medical Medium: Secrets Behind Chronic and Mystery Illness and How to Finally Heal (Hay House; November 10, 2015).
EPSTEIN-BARR VIRUS, CHRONIC FATIGUE SYNDROME, AND FIBROMYALGIA
by Anthony William
The Epstein-Barr virus (EBV) has created a secret epidemic. Out of the roughly 320 million people in the U.S., over 225 million Americans have some form of EBV.
Epstein-Barr is responsible for mystery illnesses of every category: For some people, it creates fatigue and pain that go unnamed. For others, EBV symptoms prompt doctors to prescribe ineffective treatments, such as hormone replacement. And for so many people walking around with EBV, it gets misdiagnosed.
Among the reasons EBV is thriving: so little is understood about it. Medical communities are aware of only one version of EBV, but there are actually over 60 varieties. Epstein-Barr is behind several of the debilitating illnesses that stump doctors. As I said in the Introduction, it’s the mystery illness of mystery illnesses.
Doctors have no idea how the virus operates long-term and how problematic it can be. The truth is, EBV is the source of numerous health problems that are currently considered mystery illnesses, such as fibromyalgia and chronic fatigue syndrome. EBV is also the cause of some major maladies that medical communities think they understand but really don’t—including thyroid disease, vertigo, and tinnitus.
This chapter explains when the Epstein-Barr virus arose, how it’s transmitted, how it operates to create untold havoc in strategic stages no one knows about, and the steps (never revealed before) that can destroy the virus and restore health.
EPSTEIN-BARR ORIGINS AND TRANSMISSION
Though Epstein-Barr was discovered by two brilliant physicians in 1964, it had actually begun taking hold in the early 1900s—over half a century before. EBV’s initial versions—which are still with us—are relatively slow to act, and might not even create notable symptoms until late in life. Even then, they’re only mildly harmful. Many people have these non-aggressive EBV strains.
Unfortunately, EBV has evolved over the decades, and each generation of the virus has grown more challenging than the one before.
Until the publication of this book, those with EBV would typically be stuck with it for the rest of their lives. Doctors seldom recognize EBV as the root cause of the myriad of problems it creates; plus doctors have no idea how to address the Epstein-Barr virus even when it is recognized.
There are many ways to catch EBV. For example, you can get it as a baby if your mother has the virus. You can also get it through infected blood. Hospitals don’t screen for the virus, so any blood transfusion puts you at risk. You can even get it from eating out! That’s because chefs are under tremendous pressure to get dishes prepared quickly. They often end up cutting a finger or hand, slapping on a Band-Aid, and continuing to work. Their blood can get into the food…and if they happen to have EBV during a contagious phase, that can be enough to infect you.
Transmission can also happen through other bodily fluids, such as those exchanged during sex. Under some circumstances, even a kiss can be enough to transmit EBV.
Someone with the virus isn’t contagious all the time, though. It’s most likely to spread during its Stage Two. Which brings up something else that until now hasn’t been revealed: EBV goes through four stages.
EPSTEIN-BARR STAGE ONE
If you catch EBV, it goes through an initial dormant period of floating around in your bloodstream doing little more than slowly replicating itself to build its numbers—and waiting for an opportunity to launch a more direct infection.
For example, if you physically exhaust yourself for weeks and give yourself no chance to fully recover, or allow your body to become deprived of essential nutrients such as zinc or vitamin B12, or undergo a traumatic emotional experience such as a breakup or the death of a loved one, the virus will detect your stress-related hormones and choose that time to take advantage.
EBV will also often act when you’re undergoing a major hormonal change—for example, during puberty, pregnancy, or menopause. A common scenario is when a woman goes through childbirth. Afterward, she may feel various symptoms, including fatigue, aches and pains, and depression. In this case EBV isn’t exploiting your weakness, but the fact that hormones are a powerful food source for it—their abundance acts as a trigger. The hormones flooding through your body effectively does for the virus what spinach does for Popeye.
EBV is inhumanly patient. This Stage One period of fortifying itself and waiting for an ideal opportunity can take weeks, months, or even a decade or longer, depending on a variety of factors.
The virus is especially vulnerable during Stage One. However, it’s also undetectable through tests and causes no symptoms, so you normally wouldn’t know to fight it, because you wouldn’t be aware it was there.
EPSTEIN-BARR STAGE TWO
At the end of Stage One, the Epstein-Barr virus is ready to do battle with your body. That’s when EBV first makes its presence known…by turning into mononucleosis. This is the infamous mono that we all grow up hearing about as the “kissing disease.” It’s what thousands of college students contract every year when they run themselves down with all-night partying and studying.
Medical communities are unaware that every case of mononucleosis is only Stage Two of EBV.
This is the period when the virus is most contagious. It’s therefore advisable to avoid getting exposed to blood, saliva, or other bodily fluids from someone who has mono…or to avoid exposing anyone to your fluids if you have mono.
During this Stage Two, your body’s immune system goes to war with the virus. It sends identifier cells to “tag” virus cells, i.e., place a hormone on them that marks them as invaders. It then sends soldier cells to seek out and kill the tagged virus cells. This is the power of your immune system coming to your defense.
How severely this battle rages will vary from person to person, because everyone is different, and it will also depend on what EBV strain or variety a person has. You can have mono for just a week or two with a mild scratchy throat and tiredness, in which case you aren’t likely to realize what’s really happening, so you most likely won’t visit a doctor for a blood test.
Then again, you can get hit hard with fatigue, sore throat, fever, headaches, rashes, and more that hang on for several months. If this happens, the chances are you’ll go see a doctor who’ll test your blood, and the Epstein-Barr virus will show up as a form of mono…most of the time.
It’s during this stage that EBV seeks a long-term home by making a run for one or more of your major organs—typically your liver and/or spleen. EBV loves being in these organs because mercury, dioxins, and other toxins are likely to accumulate there. The virus thrives on these poisons.
One other secret about EBV is that it has a best friend, a bacterium called Streptococcus. In such cases your body is dealing with not only a virus, but also bacteria that further confuse the immune system and produce their own array of symptoms. This is Epstein-Barr’s number one cofactor.
During EBV’s Stage Two, Streptococcus can travel up to create strep throat and/or infest the sinuses, nose, or mouth. It can also travel down to create infections in the urinary tract, vagina, kidneys, or bladder . . . eventually causing cystitis.
EPSTEIN-BARR STAGE THREE
Once the virus settles into your liver, spleen, and/or other organs, it nests there.
From this point on, when a doctor tests for Epstein-Barr, she or he will find antibodies and take these to indicate a past infection, when EBV was in its mono phase. The doctor will not find the EBV presently active in the bloodstream. The confusion here is one of the biggest blunders in medical history—this is how this virus has slipped through the cracks. Unless you have already followed the measures outlined in this book to kill the EBV, the virus is, in fact, still alive and causing new symptoms…and it’s eluding the tests. That’s because it’s living in the liver, spleen, or other organs, and the test to detect this has not yet been invented.
With the virus hiding undetected in your organs, your body assumes it’s won the war and the invader has been destroyed. Your immune system returns to its normal state, your mononucleosis ends, and your doctor tells you that you’re healthy.
Unfortunately, the Epstein-Barr virus has barely begun its voyage through your body.
If you have a typical variety, EBV could lie dormant in your organs for years—possibly for decades—without your knowing it. If you have an especially aggressive variety, though, EBV may create serious problems even while it’s nesting.
For example, the virus may burrow deep into your liver and spleen, causing those organs to become inflamed and enlarged. And once again, keep in mind that your doctor does not know to connect the dots between past EBV and its present activity in the organs.
The virus also creates three types of poison:
EBV excretes toxic waste matter, or viral byproduct. This becomes increasingly significant as the virus grows more cells, and its expanding army keeps eating and excreting poisonous byproduct. This waste matter is often identified as spirochetes, which can trigger false positives on tests such as Lyme titers (screening tests for Lyme disease) and lead to a false diagnosis of Lyme.
When a cell of the virus dies—which happens often, as the cells have a six-week life cycle—the corpse that is left behind is itself toxic and so further poisons your body. As with viral byproduct, this problem becomes more severe as EBV’s army grows, creating fatigue.
The poisons EBV creates through these two processes have the ability to generate a neurotoxin—i.e., a poison that disrupts nerve function and confuses your immune system. It will secrete this special toxin at strategic periods during Stage Three, and continuously during Stage Four, to prevent your immune system from zeroing in on the virus and attacking it.
The issues that may result from an aggressive variety of EBV nesting in your organs include:
Your liver performing so sluggishly that it does a poor job of flushing toxins out of your system.
Hepatitis C. (EBV is actually the primary cause of hepatitis C.)
Your liver’s sluggish performance leading to the lowering of your stomach’s hydrochloric acid and your intestinal tract starting to become toxic. This in turn can result in some food not being fully digested and instead putrefying in your intestinal tract, resulting in bloating and/or constipation.
Your developing sensitivities to foods that never caused you problems before. This happens when the virus consumes a food it likes, such as cheese, and transforms it into something your body doesn’t recognize.
The virus bides its time until it senses stress-related hormones indicating you’re in an especially vulnerable state—say, as a result of burning the candle at both ends, enduring a severe emotional blow, or suffering a physical jolt such as being in a car accident—or when it senses you’re undergoing hormonal upheaval, such as during pregnancy or menopause.
When the virus is nearly ready to spring, it begins excreting its neurotoxin. This adds to the burden on your system already created by EBV’s byproduct and virus corpses. All this poison in your system finally triggers your immune system—and also thoroughly confuses it, because it has no idea where the toxins are coming from.
The immune system response I’ve just described triggers the mysterious symptoms that doctors can diagnose as lupus. Medical communities have no understanding that lupus is just the body reacting to Epstein-Barr’s byproducts and neurotoxins. It’s the body having an allergic reaction to these neurotoxins, which then elevates the inflammatory markers that doctors search for to identify and diagnose lupus. In truth, lupus is just a viral infection of Epstein-Barr.
Hypothyroidism and Other Thyroid Disorders
While your immune system is in disarray, EBV takes advantage of the chaos by leaving the organs it’s been nesting in and making a run for a different major organ or gland—which this time is your thyroid!
Medical communities aren’t yet aware that EBV is the actual cause of most thyroid disorders and diseases—especially Hashimoto’s, but also Graves’, thyroid cancer, and other thyroid ills. (Thyroid disease is also sometimes caused by radiation; but in over 95 percent of cases, the culprit is Epstein-Barr.) Medical research has not yet uncovered the true causes of thyroid disorders, and it’s still decades away from discovering that EBV is the virus that causes them. If a doctor gives you a Hashimoto’s diagnosis, it really means that she or he doesn’t know what’s wrong. The claim is that your body is attacking your thyroid—a view that arises from misinformation. In truth, it’s the EBV—not your body—attacking the thyroid.
Once in your thyroid, EBV begins drilling into its tissues. The virus cells literally twist and spin like drills to burrow deep into the thyroid, killing thyroid cells and scarring the organ as they go, creating hidden hypothyroidism in millions of women, from mild cases to the more extreme. Your immune system notices this and tries to intervene, causing inflammation; but between EBV’s neurotoxin, viral byproduct, and poisonous corpses confusing things, and with EBV hiding in your thyroid, your immune system can’t tag the virus for complete destruction.
While the above may sound unnerving, don’t let it rattle you; your thyroid has the ability to rejuvenate and heal itself when it’s given what it needs. And never underestimate the power of your immune system, which by the end of this chapter will become activated just by you learning the truth.
As a fallback option, your immune system tries to wall off the virus with calcium, creating nodules in your thyroid. However, this doesn’t hurt EBV. First, most of its cells evade this attack and remain free. Second, a virus cell that your immune system successfully walls off typically remains alive and turns its calcium prison into a comfortable home, where it feeds on your thyroid, draining it of energy. The virus cell might even eventually transform its prison into a living growth, called a cyst, that creates further strain on your thyroid.
Meanwhile, these attacks against EBV can hurt you if you aren’t eating enough calcium-rich foods. That’s because if your immune system can’t get the calcium to wall off the virus from your bloodstream, it’ll extract what it needs from your bones…which can lead to osteoporosis.
Simultaneously, the hundreds of virus cells that aren’t imprisoned in nodules can weaken your thyroid, making it less effective at producing the hormones your body needs to function. This lack of adequate thyroid hormones, coupled with EBV’s toxins, can in turn lead to weight gain, fatigue, mental fogginess, impaired memory, depression, hair loss, insomnia, brittle nails, muscle weakness, and/or dozens of other symptoms.
Some especially rare, aggressive varieties of EBV go even further. They create cancer in the thyroid. The rate of thyroid cancer in the U.S. has been rising rapidly. Medical communities don’t know that the cause is an increase in rare, aggressive forms of EBV.
The Epstein-Barr virus invades your thyroid for a strategic reason—it’s seeking to confuse and place stress on your endocrine system. The strain on your adrenal glands produces more adrenaline, which is a favored food of EBV that makes it stronger and better able to go after its ultimate target: your nervous system.
EPSTEIN-BARR STAGE FOUR
The ultimate goal of the Epstein-Barr virus is to leave your thyroid and inflame your central nervous system.
Your immune system normally wouldn’t allow this to happen. But if EBV has successfully worn you down in Stage Three by entering your thyroid, and if on top of that you abruptly get clobbered with some physical or severe emotional injury, the virus will take advantage of your vulnerability and start to cause a multitude of strange symptoms that range from heart palpitations to generalized aches and pains to nerve pain.
A common scenario is being in an accident, getting surgery, or suffering some other physical damage, and then feeling awful for much longer than would be expected from the injury alone. A typical reaction is to “feel like a truck hit me.”
Blood tests, X-rays, and MRIs will reveal nothing wrong, so doctors won’t be aware of the virus inflaming the nerves. Stage Four Epstein-Barr is therefore a major source of mystery illnesses—that is, problems that cause doctors massive confusion.
What’s actually happening is that your injured nerves trigger an “alarm” hormone to notify your body that the nerves are exposed and need repair. In Stage Four, EBV detects that hormone and rushes over to latch onto those damaged nerves.
A nerve is similar to a string of yarn with little root hairs hanging off it. When the nerve is injured, the root hairs pop off the sides of the nerve sheath. EBV looks for those openings and grabs onto them. If it succeeds, it can keep the area inflamed for years. As a result, you can have a relatively small injury that remains flared up and causes you continual pain.
The issues that result from this viral inflammation can include muscle pain, joint pain, painful tender points, back pain, tingling and/or numbness in the hands and feet, migraines, ongoing fatigue, dizziness, insomnia, unrestful sleep, and night sweats. Patients with these issues are sometimes diagnosed as having fibromyalgia, chronic fatigue syndrome, or rheumatoid arthritis, all of which are collections of symptoms that medical communities admit they don’t understand and for which they have no cure. In such cases the patients are given inappropriate treatments that don’t begin to address the real culprit—because these mystery illnesses are really Stage Four Epstein-Barr.
One of the greatest missteps of all time is mistaking women’s Epstein-Barr symptoms for perimenopause and menopause. Symptoms such as hot flashes, night sweats, heart palpitations, dizziness, depression, hair loss, and anxiety were and are frequently misinterpreted as hormonal change—which is what launched the disastrous HRT movement. (To learn more, see Chapter 15, “Premenstrual Syndrome and Menopause.”)
Let’s take a closer look at the chronic illnesses that have puzzled doctors for decades and are the result of Stage Four Epstein-Barr.
Chronic Fatigue Syndrome
There’s a long history of womankind facing denial that there’s a physical cause of their suffering. Like those with fibromyalgia (see below), people with chronic fatigue syndrome (CFS)—also known by names such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic fatigue immune dysfunction syndrome (CFIDS), and systemic exertion intolerance disease (SEID)—often hear that they are liars, lazy, delusional, and/or crazy. It’s an illness that affects women in disproportionately large numbers.
And chronic fatigue syndrome is on the rise.
It’s becoming common for young women in college to return home mid-semester with the condition, unable to do anything but lie in bed. Contracting CFS as a woman in your late teens or early 20s can be particularly devastating as you watch friends move on with relationships and jobs, meanwhile feeling stuck and unable to live up to your potential.
Women who get CFS in their 30s, 40s, or 50s have their own obstacles: while you’re old enough at this point to have an established life and support network, you also have established responsibilities. You’re likely trying to be everything to everybody, taking care of more than you can handle, and so you feel the pressure to act normal when CFS hits.
Compounding the isolation for both age groups are the feelings of guilt, fear, and shame that accompany their misdiagnoses. I’m sure that if you have CFS, you’ve been in the depths of physical suffering and had someone say, “But you look perfectly healthy.” It is so disheartening to feel unwell and hear from practitioners, friends, or family that there’s nothing wrong with you.
Chronic fatigue syndrome is real. It’s the Epstein-Barr virus.
As we’ve seen, those with CFS have an elevated viral load of EBV, which systematically afflicts the body by creating a neurotoxin that inflames the central nervous system. This can eventually weaken the adrenals and digestive system, and create the feeling that you have a low battery.
We’ve had over six decades of medical denial that fibromyalgia is a legitimate problem. Now, medical communities are finally accepting it as an actual condition.
The best explanation doctors are given by the establishment, though, is that fibromyalgia is overactive nerves. What this really translates to is…no one has a clue. It’s not the doctors’ fault. There’s no magic book they receive that tells them what will help their fibromyalgia patients or what is genuinely causing their pain.
The medical system is still years from discovering the illness’s true root—because it’s viral, and it takes place at a nerve level that medical tools currently can’t detect.
Those suffering from fibromyalgia are under a very real and debilitating attack. It’s the Epstein-Barr virus that is causing this disorder, inflaming both the central nervous system and nerves throughout the body, which creates ongoing pain, sensitivity to touch, severe fatigue, and a host of other issues.
Tinnitus, or ringing in the ear, is usually caused by EBV getting into the inner ear’s nerve channel, called the labyrinth. The ringing is the result of the virus inflaming and vibrating the labyrinth and the vestibulocochlear nerve.
Vertigo and Meniere’s Disease
Vertigo and Meniere’s disease are often attributed by doctors to calcium crystals, or stones, becoming disrupted in the inner ear. However, most chronic cases are actually caused by EBV’s neurotoxin inflaming the vagus nerve.
Anxiety, dizziness, chest tightness, chest pain, esophageal spasms, and asthma can also be caused by EBV inflaming the vagus nerve.
Insomnia, and tingling and numbness in hands and feet, can be caused by phrenic nerves becoming perpetually inflamed by EBV.
And heart palpitations can result from buildup of EBV’s poisonous virus corpses and byproduct in the heart’s mitral valve.
If you have EBV, or suspect you do, you may find the virus in Stage Four beyond frustrating. Take comfort. If you take the right steps—which medical communities don’t know about yet, but which are covered at the end of this chapter—you can recover, rebuild your immune system, return to a normal state again, and regain control of your life.
TYPES OF EPSTEIN-BARR
As I’ve noted earlier, there are over 60 varieties of the Epstein-Barr virus. That number is so large because EBV has existed for well over 100 years. It’s had generations of people to move through, mutating and elevating its various hybrids and strains in that time. The strains can be organized into six groups of escalating severity, with roughly ten types per group.
EBV Group 1 is the oldest and mildest. These versions of the virus typically take years, even decades, to transition from one stage to another. Their effects might not be noticeable until you’re in your 70s or 80s, and then result in little more than back pain. They might even remain in your organs and never reach Stage Three or Stage Four.
EBV Group 2 moves from stage to stage a bit quicker than Group 1; you might notice symptoms in your 50s or 60s. These varieties may partially linger in the thyroid and send only some of their virus cells out to inflame nerves, resulting in relatively mild nerve inflammation. The only variety of EBV that medical communities are aware of is in this group.
EBV Group 3 will transition between stages faster than Group 2, so its symptoms might be noticeable around age 40. Also, these viruses fully complete Stage Four—that is, they entirely leave the thyroid to latch onto nerves. Viruses in this group can cause a variety of ills, including joint pain, fatigue, heart palpitations, tinnitus, and vertigo.
EBV Group 4 will create noticeable problems as early as age 30. Its aggressive actions on nerves can result in symptoms associated with fibromyalgia, chronic fatigue syndrome, brain fog, confusion, anxiety, moodiness, and everything caused by Groups 1 to 3. This group can also create symptoms of post traumatic stress disorder, even if a person never underwent any trauma beyond getting inflamed by the virus.
EBV Group 5 will create noticeable issues as early as age 20. This is an especially nasty form of the virus because it strikes just when a young person is setting out to start an independent life. It can create all the problems of Group 4, and it feeds off negative emotions such as fear and worry. Doctors who can’t find anything wrong, and perceive these patients as young and healthy, often declare “it’s all in your head” and send them to psychologists to convince them what’s actually happening in their bodies isn’t real. Unless, that is, a patient happens upon a doctor who’s up on the Lyme disease trend, in which case the patient will probably walk away with a Lyme misdiagnosis.
The worst type, however, is EBV Group 6, which can strike hard even in young children. In addition to everything Group 5 does, Group 6 can create symptoms so severe that they’re misdiagnosed as leukemia, viral meningitis, lupus, and more. Plus it suppresses the immune system, which can lead to a wide variety of symptoms including rashes, weakness in the limbs, and severe nerve pain.
HEALING FROM THE EPSTEIN-BARR VIRUS
Because it’s very easy to catch and hard to detect, and can cause a number of mysterious symptoms, you might understandably find the Epstein-Barr virus overwhelming and its effects disheartening.
The good news is that if you carefully and patiently follow the steps detailed in this section, and in Part IV of the book, you can heal. You can recover your immune system, free yourself of EBV, rejuvenate your body, gain full control over your health, and move on with your life.
How long the process takes varies for each individual and depends on myriad factors. Some people conquer the virus in as little as three months. However, a more typical period is a full year. And there are some people who need 18 months or more to destroy EBV.
Certain fruits and vegetables can help your body rid itself of EBV and heal from its effects. The following are the best ones to incorporate into your diet (listed in rough order of importance). Try to eat at least three of these foods per day—the more the better—rotating your consumption so that in a given week or two, you get all of these foods into your system.
Wild blueberries: help restore the central nervous system and flush EBV neurotoxins out of the liver.
Celery: strengthens hydrochloric acid in the gut and provides mineral salts to the central nervous system.
Sprouts: high in zinc and selenium to strengthen the immune system against EBV.
Asparagus: cleanses the liver and spleen; strengthens the pancreas.
Spinach: creates an alkaline environment in the body and provides highly absorbable micronutrients to the nervous system.
Cilantro: removes heavy metals such as mercury and lead, which are favored foods of EBV.
Parsley: removes high levels of copper and aluminum, which feed EBV.
Coconut oil: antiviral and acts as an anti-inflammatory.
Garlic: antiviral and antibacterial that defends against EBV.
Ginger: helps with nutrient assimilation and relieves spasms associated with EBV.
Raspberries: rich in antioxidants to remove free radicals from the organs and bloodstream.
Lettuce: stimulates peristaltic action in the intestinal tract and helps cleanse EBV from the liver.
Papayas: restore the central nervous system; strengthen and rebuild hydrochloric acid in the gut.
Apricots: immune system rebuilders that also strengthen the blood.
Pomegranates: help detox and cleanse the blood as well as the lymphatic system.
Grapefruit: rich source of bioflavonoids and calcium to support the immune system and flush toxins out of the body.
Kale: high in specific alkaloids that protect against viruses such as EBV.
Sweet potatoes: help cleanse and detox the liver from EBV byproducts and toxins.
Cucumbers: strengthen the adrenals and kidneys and flush neurotoxins out of the bloodstream.
Fennel: contains strong antiviral compounds to fight off EBV.
Healing Herbs and Supplements
The following herbs and supplements (listed in rough order of importance) can further strengthen your immune system and aid your body in healing from the virus’s effects:
Cat’s claw: herb that reduces EBV and cofactors such as strep A and strep B.
Silver hydrosol: lowers EBV viral load.
Zinc: strengthens the immune system and protects the thyroid from EBV inflammation.
Vitamin B12 (as methylcobalamin and/or adenosylcobalamin): strengthens the central nervous system.
Licorice root: lowers EBV production and strengthens the adrenals and kidneys.
Lemon balm: antiviral and antibacterial. Kills EBV cells and strengthens the immune system.
5-MTHF (5-methyltetrahydrofolate): helps strengthen the endocrine system and central nervous system.
Selenium: strengthens and protects the central nervous system.
Red marine algae: powerful antiviral that removes heavy metals such as mercury and reduces viral load.
L-lysine: lowers EBV load and acts as a central nervous system anti-inflammatory.
Spirulina (preferably from Hawaii): rebuilds the central nervous system and eliminates heavy metals.
Ester-C: strengthens the immune system and flushes EBV toxins from the liver.
Nettle leaf: provides vital micronutrients to the brain, blood, and central nervous system.
Monolaurin: antiviral; breaks down EBV load and reduces cofactors.
Elderberry: antiviral; strengthens the immune system.
Red clover: cleanses the liver, lymphatic system, and spleen of neurotoxins from EBV.
Star anise: antiviral; helps destroy EBV in the liver and thyroid.
Curcumin: component of turmeric that helps strengthen the endocrine system and central nervous system.
A Career Almost Lost to Epstein-Barr
Michelle and her husband, Matthew, both had high-paying corporate jobs. Michelle was a star at her firm and made a point of going to work throughout her pregnancy, leaving only when she was about to go into labor.
After giving birth, Michelle instantly fell in love with her new son, Jordan. She couldn’t have been happier. I have it all now, she thought, a career I love, and a family I love even more.
But Michelle’s bright future started to dim when she was struck with a fatigue she couldn’t shake. No matter how many vitamins she took or how much she exercised, she felt run-down all the time. So Michelle visited her doctor. After giving her a physical, he dismissed her concerns: “You look fine to me. It’s natural for a new baby to be exhausting. Just get more sleep and don’t worry about it.”
Michelle took care to sleep more. After another week, she felt worse than ever. Suspecting a post-pregnancy issue, Michelle went to see her OB/GYN. This doctor drew her blood for a number of tests, including several for thyroid disease. When the lab results came in, the OB/GYN correctly diagnosed Michelle as having Hashimoto’s—i.e., her thyroid was no longer producing the level of hormones needed.
Michelle was put on thyroid medication to get her hormone levels back to normal. This made her feel a little better…though not quite as well as she had before her pregnancy. She’d been aiming to return to work a month after having her son, and now she had to postpone those plans.
After about six months, Michelle’s fatigue was back—and much more severe. That’s when Michelle’s troubles really began. Soon she had trouble taking care of Jordan. Matthew agreed to help out until she felt better.
Instead, Michelle grew worse. On top of being tired, she started to feel aches and pains, especially in her joints. Michelle returned to her OB/GYN, who ran another set of tests. The lab results showed nothing wrong. Thanks to the thyroid medication Michelle was continuing to take, her thyroid levels were perfect. So were all her vitamin and mineral levels. The OB/GYN was baffled.
Suspecting that Michelle’s symptoms were related to her thyroid condition, the OB/GYN referred Michelle to a top endocrinologist (a doctor who specializes in hormonal issues). The specialist conducted a thorough thyroid profile, and tested Michelle’s other hormone levels from a variety of angles. He ended up telling Michelle she had “mild adrenal fatigue.”
There was some small truth to that. Michelle’s adrenal glands were being strained by the Epstein-Barr virus, which her pregnancy had triggered and which was now inflaming her thyroid.
The endocrinologist told Michelle to take it easy and avoid stress. On his recommendation, Michelle handed off the freelance consulting projects she’d been working on from home.
In reality, Michelle’s job had nothing to do with her condition. Her source of stress wasn’t her work, but the illness that was eating away at her life…and her seeming helplessness to understand it or do anything about it.
Michelle continued to get worse. Her knees flared up and swelled, making it difficult to walk. She bought knee supports…and decided to pursue help more aggressively. Michelle’s intuition told her an invader was present in her body, so she went to see an infectious disease specialist. This would be precisely the right thing to do—if infectious disease doctors actually knew how to recognize and treat past infections of EBV.
Unfortunately, they don’t. So after running an exhausting battery of tests and noticing that Michelle had an antibody from a past EBV infection, he dismissed it as a problem right away. This doctor told her she was physically fit. He added that she might be depressed, and offered to refer her to a psychiatrist.
Infuriated at being made to feel she was crazy for trying to address what she deeply sensed was a real physical problem, Michelle (painfully) rose and strode out of the room.
With increasing desperation, Michelle now visited doctors across the spectrum. They put her through ultrasounds, X-rays, MRIs, CT scans, and loads of blood tests. She was told she had Candida, fibromyalgia, MS, lupus, Lyme disease, and rheumatoid arthritis. None of it was right. She was put on immunosuppressant drugs, antibiotics, and loads of different supplements. None of the treatments helped.
Michelle became an insomniac, suffered heart palpitations, and developed chronic vertigo that caused dizziness and nausea. She dropped from 140 to 115 pounds.
Soon, Michelle was spending most of her days in bed. She was wasting away. Her husband, Matthew, was terrified.
After Michelle had spent four years exploring all other options, and based on the recommendation of the naturopath Michelle visited, Matthew called my office as a last resort. When my assistant answered, Matthew burst into tears. “What’s wrong?” she asked.
He replied, “My wife is dying.”
For our first appointment Matthew planned to do most of the talking while sitting next to Michelle, who was in bed. Less than a minute after Matthew started telling me Michelle’s story, I interrupted him. “It’s okay,” I said. “Spirit tells me it’s an aggressive form of the Epstein-Barr virus.”
The virus’s neurotoxin was inflaming all of Michelle’s joints. Her insomnia and foot pain were the result of her phrenic nerves being perpetually inflamed. Her vertigo stemmed from EBV’s neurotoxin inflaming her vagus nerve. And her heart palpitations were being caused by buildup of EBV virus corpses and viral byproduct in her mitral valve.
“Don’t worry,” I told Michelle and Matthew. “I know how to beat this virus.”
Michelle exclaimed, with as much joyful energy as she could muster, “I knew it was a virus!”
It was the first critical step in her recovery.
I recommended a blend of celery juice and papaya, which is great for boosting someone in Michelle’s condition (e.g., low weight, not being able to eat, high number of virus cells). I followed that up with the recommendations for healing in this chapter, including a list of helpful supplements, as well as the recommendations from Part IV, “How to Finally Heal.”
The cleanse diet immediately stopped feeding Michelle’s EBV. Within a week, there was a noticeable reduction of the swelling in her knees. The L-lysine shut down Michelle’s vertigo. And the other supplements started killing virus cells and/or dampening the production of new ones.
In three months, Michelle was regularly up and walking again. In nine months, she was once again working part-time at her challenging corporate job.
And in 18 months, Michelle’s pain and suffering were just a memory—she’d taken control over EBV. Today, Michelle has fully recovered her health. She’s returned to juggling her job and her family energetically and happily.
An End to CFS Confinement
Cynthia was a mother of two. Shortly after her youngest, Sophie, was born, Cynthia began experiencing fatigue. It took everything she had to push through the day, and she relied on increasing her coffee intake just to function. Within a few years, she had to quit her part-time job at a clothing store because long naps were taking up her afternoons. She needed the rest so she could be strong enough to meet her kids at the school bus, make dinner, and help them with their homework.
Cynthia noticed herself becoming irritable, and arguments arose often with her husband, Mark, who didn’t understand why she was tired all the time. After all, the tests that Cynthia’s doctor had run indicated nothing was wrong. The doctor said she was healthy and concluded that maybe she was just unhappy or depressed.
This made Cynthia want to walk out of the doctor’s office without another word. Any blue mood she experienced was because she was tired all the time and could barely function—not the other way around. Yet her husband sided with the doctor and became increasingly resentful toward her.
The ongoing stress put Cynthia on overload; life felt impossible to keep up with. She couldn’t find the energy to brush her hair, and the mere thought of running the vacuum cleaner or washing the dishes exhausted her. From the outside, it looked like she was giving up on life. Mark got angrier—he was talking separation now. “I work too long and hard at the office all day to worry about taking care of things at home,” he said. “This is supposed to be your department.”
Cynthia felt more pressure than ever to get better, but the worries about her marriage and what would happen to her children put her fatigue at an all-time high. She could barely drive to the grocery store or make dinner for her family. All she could do was lie in bed or on the couch.
This is what a moderate-to-severe case of undiagnosed chronic fatigue syndrome can look like. When Cynthia called me, her life had fallen apart. Her husband had left her, and her daughter, Sophie, now seven years old, and her son, Ryan, age nine, had lost their family unit. What her doctor had misconstrued as a psychiatric condition was an actual physical problem: Epstein-Barr virus. The same story applies to far too many women.
I set to work informing Cynthia that she had a case of EBV that her doctor had missed. With an emphasis on getting her viral load under control and addressing nutritional deficiencies, I laid out the background on CFS that I described earlier in this chapter, and I explained the protocols outlined here and in Part IV. Like her life depended on it—because it did—Cynthia followed Spirit’s advice.
Slowly, Cynthia began to get better. Her adrenals recovered normal function, and her stamina returned. Once again, she could tend to her children, run errands, keep the house in shape, and do her hair—all without the gallons of coffee she used to rely on. Cynthia finally had the energy to return to work, too.
After witnessing this change in his wife, Mark called Cynthia and asked her out to dinner—his mother would look after the kids, he said. When they arrived at the fancy restaurant, which had long ago been the deli where they had flirted as college students, Mark told Cynthia he’d called ahead and ordered a special healing-food meal for her—and that he’d ordered the same for himself, out of solidarity. Over sundried-tomato hummus and vegetable nori rolls, Mark didn’t exactly cry (some things would always stay the same), but he did have to dab at his eyes as he apologized for how he’d behaved.
Cynthia was quiet, then answered with a playful smile: “You can make it up to me.”
After a few weeks of testing the waters—Cynthia wanted to make sure Mark didn’t just want her back as a security blanket and housekeeper—they moved back in together as a family. Mark now wakes up early every Saturday morning so he can get to the farmers’ market before they run out of salad greens.
Fibro Pain Forgotten
Stacy, a 41-year-old part-time receptionist in a doctors’ office, had been married to Rob, who worked at a car dealership, for over 15 years. She never had the energy to keep up with the outings Rob planned with their daughters. In fact, she couldn’t remember ever feeling that well. She always felt slightly achy and more tired than her friends seemed to be. And since she’d given birth to her second child, who was now 11, the fatigue and muscle soreness had been more pronounced.
One weekend while Rob and the kids were at a museum, she went for a longer walk than usual—she’d decided to push herself to lose some unwanted weight she’d gained in the last few years. Afterward, she noticed an unusual pain in her left knee. Thinking back to her college basketball coach’s advice to “walk it off,” she tried to ignore it.
It didn’t go away. Two weeks later, she scheduled time for an exam with a doctor at her office. Stacy limped out of the appointment with a prescription for an MRI—which revealed nothing visibly wrong with her knee.
Because Stacy’s balance was off from leaning on her “good” leg, she found herself tripping easily—stairs, curbs, and corners of rugs had become major obstacles. Then her right knee started to hurt even though it hadn’t gotten injured in any of her falls, and exams showed nothing amiss. Stacy’s worry escalated to fear—something was really wrong. The doctors in her office ruled out rheumatoid arthritis, though, and guessed that the extra 30 pounds Stacy was carrying were to blame for her pain.
Soon Stacy started to hurt in other places. Now she couldn’t raise her hands over her head without her arms and neck hurting. She was unable to work anymore, and depression set in as she started to spend hours at home on the sofa. At night, Rob would make dinner for the family and send their daughter to serve Stacy her plate of food on the couch.
A specialist concluded that Stacy had fibromyalgia. When Stacy asked what caused it, the doctor responded, “We don’t know. It’s what we think is oversensitive nerves. This should help, though.” She handed Stacy a prescription for a medicine popular for treating depression and fibromyalgia pain. At her next visit to the specialist, when Stacy reported no progress, the doctor referred her to me.
After I explained what her fibromyalgia really was, that the real cause was the Epstein-Barr virus and that it had been in her system since childhood, Stacy recalled having a bout of mononucleosis at age 14. She finally felt she had a real answer. She understood now that poor diet, nutritional deficiencies, and increased stress had triggered the formerly dormant EBV to surface as fibromyalgia. Not knowing what was wrong with her—the powerlessness—had been scarier than knowing the true cause; the mystery of her mystery illness had been the hardest part. Now she had direction and felt confident in her ability to heal.
Within six months of our first call, following the same suggestions I describe in this chapter and Part IV, “How to Finally Heal,” she was free from fibromyalgia, back to work, and living life again. She told me she felt happier and healthier than ever, and that she’d planned the next family outing—apple picking at an organic orchard.