I have had Lyme disease for nearly 25yrs and it can be debilitating and deadly as cancer. Was bed ridden 3yrs ago and went to Germany for hyperthermia treatment and now much improved, but still not even close to being compared to a “normal “ person. I Still suffer daily headaches/migraines, fibromyalgia (very bad at night in almost every joint possible.) Plus about ten other issues including chronic fatigue (not daily anymore). . . . but these are my major issues. My migraines are so bad that at times I can feel arms and legs at times and brain and eye sight bad … but not as bad as pre-Germany.
I used to have symptoms of stroke, Parkinson’s, M.S., dementia and the list goes on.
Any ideas where to start would be fantastic!!! Thank you
Thirty years of progressive fibromyalgia, endometriosis, scoliosis, interstitial cystitis, pancreatitis, small fiber peripheral neuropathy, arthritis, skeletal muscle seizing, four laparoscopic surgeries (scrapings) for the endometriosis which always comes back.
It’s now in my organs. Hysterectomy which caused damage to my bladder and rectum, also dissect my right corroided artery during intubation which caused loss of left side and lost my sight in right eye. I’ve worked very hard to strengthen left side. Anticipatory anxiety and PTSD from all the trauma. My morphine and vicodin scripts were taken last year because of the “opioid crisis” and they left me for dead. My family found kratom and it saved my life ♡.
Artemisinin for Lyme disease and Babesia for Fibromyalgia. Greed .. Western Doctors They know.. so little and are behind with the times. ..you must become your own doctor.
It is the UV blood treatment I believe it is called “updox” . I had 10 originally and I’m going back for 4 more starting next week. I don’t believe there are many of these in the U.S. and of course insurance doesn’t recognize it. My doctor is Dr. Green (Green Medical) Oshkosh, Wisconsin. http://gmofwi.com/test_srvcz.html and people come from around the US to see him.
Perhaps worst case he could recommend someone close as he does know other specialists. He is a good guy and he is WAY into all of this. Years ago he was my personal doctor and when I used to fly, he was also the local flight physician. He got tired of having to operate in commercial medicine as it was all about sales. He genuinely wants to help people so he went on his own. Not only is he an MD but he is also a microbiologist thus the fascination with this bacteria.
Dr. Joseph G. Jemsek, MD, FACP, AAHIVS Infectious Disease Specialist; Lyme Borreliosis and Tick-Borne infection; HIV/AIDS. Joseph Jemsek, MD is the namesake and founder of the Jemsek Specialty Clinic of Washington, D.C. The testing is also called Enzyme-linked immunosorbent assay (ELISA) test.
Holistic Health Coach | Ashley Iovinelli
Ashley’s mission is to educate and support you to create sustainable lifestyle changes that allow you to embark on a life-long health journey, because wellness is not a destination— it is a way of life. She is incredibly passionate about helping others learn about nutrition and nourishing their body, mind, and soul with real foods, a powerful mindset, and an irresistable self-care plan. Under Our Skin Documentary – Extended Trailer!!!
Healthy living is not limited to eating well, but also includes relationships, stress management, self-care, exercise, and spiritual and mental health. Ashley’s “real food” diet and holistic self-care approaches have empowered her to overcome debilitating symptoms and illnesses, and allowed her to live a more joyful life. When you create balance in all areas of your life, everything falls into place, and you can live the life you desire–your potential is limitless!
The food we eat can be either the safest and most powerful form of medicine or the slowest form of poison. -Ann Wigmore
Lyme disease has become a major health crisis, and it can be a very controversial topic. Most doctors still don’t understand Lyme disease enough to properly diagnose it, let alone treat it. Given this information, there are hundreds, if not thousands, of individuals walking around with Lyme disease who don’t even realize it — and I was one of them.
At some point in the past few years I was bit by a tick, and since I don’t recall ever being bit, it was most likely a nymph – which is about the size of a poppy seed. At that moment, little did I know, my life would be forever changed. The Lyme spirochetes went straight to work by drilling into my tissues and viciously spreading throughout my blood to eventually infect my joints, nerves, cervical spine, and central nervous system.
By the time I was diagnosed with Lyme disease, I had seen over 10 specialists, including neurologists, rheumatologists, spine specialists, orthopedic surgeons, physical therapists, and a cardiologist.
I underwent numerous MRIs, CT scans, X-rays, EMGs (my least favorite of them all), and hundreds of blood tests. Doctors had thrown around the idea of rheumatoid arthritis, lupus, fibromyalgia, or multiple sclerosis. No one could figure out a diagnosis, however, everyone agreed on one thing…there was definitely something wrong with me.
Over the course of a year and half my symptoms included: numbness and tingling, severe neck stiffness and pain, joint swelling and pain, bruising, neuropathy, costochondritis, bladder cystitis, paralysis, muscle weakness and spasms, hemiplegic migraines, vision problems, loss of appetite, nausea, brain fog, insomnia, fevers and chills, anxiety, mood changes, hypoglycemia, tachycardia, and myoclonic seizures. The symptoms often migrated, were unpredictable, and could last for days or weeks at a time.
During my journey to a diagnosis, I spent several days helplessly crying in my bath tub because the pain was so severe and my medications weren’t cutting it. I wanted to go to the hospital, but I knew there wasn’t much they could do for me since no one knew what was wrong. There were low points when I really thought I might be dying. But, even on the bad days, my illness does not define me, and moments of weakness do not make me weak. Through God’s grace and a lot of self-care, I have transformed my weaknesses into strength and courage which has helped to carry me through each minute, day, week, and season of my life.
I was eventually referred to a Lyme Literate Medical Doctor (LLMD) in Wisconsin who clinically diagnosed me, and confirmed the diagnosis through more detailed blood work from Igenex. Up until then, I had tested negative on the standard Lyme disease blood test, so I was told by a handful of doctors that there is no way I could have Lyme disease. I knew something was very wrong with me, and I continued to follow my gut until I received a proper diagnosis. I am grateful that my illness was found, but there are so many people out there struggling in Lyme limbo, and I can only hope that they find the help they need through more advocacy, research, education, and policy changes.
Just before the Lyme symptoms came on, I was the poster child of healthy living.
I drank green juice daily, threw back wheatgrass shots, cooked organic homemade meals, practiced hot yoga, and ran several days a week. I spent the remainder of my days working as a marketing manager and playing with my energetic toddler and puppy.
My life completely changed that day I was bit by a tick, and if it can happen to me, a healthy, young mom from Chicago, it can happen to anyone. To this day, most people don’t realize the deep impact Lyme. . . has had on my family – emotionally, physically, and financially. My hope and wish is that people become more aware of Lyme and other invisible illnesses, so we can work together to develop better prevention, testing, and treatments.
Its been a wild ride, to say the least, but I’ve learned many valuable lessons along the way that have helped me gracefully handle the day-to-day challenges of living with a chronic illness.
1. Get out of bed.
This one is easier said than done, but when you are dealing with a physical (or mental) illness, the first few minutes of the day. . . .are the most crucial for setting the tone. If you can make an effort to get out of your bed as quick as possible, you can drive your day with more motivation and energy. The longer you lay around, the easier it is to fall into a pit of despair, fatigue, and anxiety. If it helps motivate you, choose a positive affirmation or two to repeat each morning upon waking.
2. Self-care is not selfish.
One of the best things you can do for yourself when faced with an illness or challenging time is to up your self-care game. Its not selfish to set aside time to take care of your mind, body, and spirit. Get a massage, book a pedicure, curl up with a good book, or meditate, visit a himalayan salt cave, go shopping — whatever translates to relaxation for you, make sure to add more of that to your life.
3. It’s OK to say no.
When living with a chronic illness it is important to choose your activities wisely. If you aren’t feeling up for something, even if you already committed to it, it’s OK to back out. Changing plans because of how you feel doesn’t make you a shady person, it makes you a strong person for putting your health first.
4. Protect your energy.
When you are battling a chronic illness, it takes more energy than normal to complete daily tasks. Don’t let your precious energy get depleted by others. Energy vampires are real and they can drain your life force quicker than you cant count to 10. If someone in your life is constantly negative, needy, or you just get that overwhelmed, drained feeling around them, it might be best to avoid your exposure to them during your healing process. Energy vampires can feed on what little energy you have, which will only leave you feeling more fatigued and deflated after any type of contact with them.
5. Just breathe.
When you are dealing with physical pain or discomfort, your body can naturally become more tense as a result which can lead to labored breathing. If you can make it a point to take cleansing breaths throughout the day you can re – energize your body and mind by releasing stale air to clear space for fresh oxygen. If any moment throughout the day feels too overwhelming or challenging, come back to your breath and breathe it out because “this too shall pass.” In through your nose and out through your mouth.
6. Don’t sweat the small stuff.
When you don’t feel well, even the simplest of tasks can seem daunting. Don’t let the little things add weight to your already heavy load. It’s OK to leave the dishes for the next morning, or let the clothes sit in the dryer a little longer. Whatever task is staring you in the face will still be waiting for you tomorrow, and the next day, and the day after that, so rest up and take your time!
7. Kids and pets provide free therapy.
On some of my worst days, it was my 2-year-old son who provided the “best medicine” by giving me a hug and telling me that “everything was going to be OK.” Next time you are feeling sick or defeated, try spending some time with a child or puppy. It is amazing how quickly your mood can change. Their innocence and love can magically pull you out of your misery or pain. The pure compassion a child or pet can offer is stronger than words can describe.
8. Positivity is key.
Your beliefs become your thoughts, your thoughts become your words, and you know how the rest of that goes. Your body hears every single thing your mind says, and with the average human having around 60,000 thoughts a day, that’s a huge opportunity to either tear yourself down, or lift yourself up. Feed your brain with positive fuel it can use to help combat your illness and energize your soul. Keeping a daily journal of positive affirmations is a great way to reshape your mindset.
9. Stress management is crucial.
Stress wreaks havoc on the gut, which in turn can lower the effectiveness of the immune system – see where I’m going with this? With over 70 percent of your immune system located in your gut, when dealing with a chronic illness, it’s crucial to get your stress under control. Prioritize your time and tasks, and don’t overwork yourself. Try utilizing a wall or pocket calendar to keep track of tasks so you can better visualize what your day and week will look like ahead of time. Some people find it beneficial to work with a professional such as a counselor or health coach to help manage their stress and set realistic goals.
10. When life gives you Lyme, make margaritas.
When you are faced with a chronic illness or any adversity in life, you always have two choices. You can either throw a pity party, or you can embrace your situation and make the best of it. You can train your mind to see the good in everything because positivity is a choice. When faced with chronic illness, I refused to be sidelined in my own life. Even though my margarita may be virgin these days, I still love a good party and quality time spent with family and friends. Some days are more difficult than others, but I continue to show up in my life for the people and things that matter. After all, love and laughter heals the soul.
“They” say what doesn’t kill you only makes you stronger. This sentiment could not be more true when it comes to Lyme disease or any chronic illness. Just remember that you are stronger than you know and braver than you think. So, raise your full glass and cheers to health, healing and happiness!
Sincerely,
Ashley 🙂
Lyme disease: lessons from a survivor!!!
Saskatoon man shares terrifying ordeal with Lyme disease!!!
http://www.cbc.ca/player/play/1227467331587 https://www.facebook.com/sasklymedisease/ http://www.usask.ca/vmc/news/2014/ticks-101.php
If I knew then what I know now…
I would have found a Lyme-literate doc. My ordeal landed me in the middle of a controversy: Not everyone believes in chronic Lyme disease, so care varies wildly depending on which doctor you see. The Infectious Diseases Society of America (IDSA) in Arlington, Virginia, asserts that there is no medical proof the Lyme bacteria persist long-term. “But dozens of studies have found evidence of Lyme infection from biopsies and body fluids of chronically ill patients who’ve had far more than 30 days of antibiotics,” counters Steven Phillips, M.D., former president of the International Lyme and Associated Diseases Society (ILADS) in Bethesda, Maryland. If you suspect you have chronic Lyme, find an M.D. through TurnTheCorner.org who will fully investigate your hunch.
I would have sought the best test. Guidelines from the Centers for Disease Control and Prevention in Atlanta suggest doctors order an enzyme-linked immunosorbent assay (ELISA) first and use a Western blot test only to confirm a positive or inconclusive ELISA. But the Western blot is much more accurate, so ask for it, recommends Joseph J. Burrascano Jr., M.D., director of ILADS. Try to get a full-spectrum Western blot, which reports on all 16 antibody bands linked to Lyme. (Certain antibodies are more specific to Lyme.)
But note: Only 50 to 70 percent of people with Lyme have a positive blood test at all—another good reason to seek out a doctor who is trained to recognize its symptoms.
I would have insisted on at least four weeks of antibiotics. The IDSA advises against taking antibiotics long-term to treat Lyme—particularly when the drugs are being used for an unverified infection—and warns that it can unnecessarily foster side effects such as drug resistance or bloodstream infection. However, Dr. Burrascano and other Lyme experts maintain that anything less than four weeks is linked with higher rates of treatment failure.
Born in the U.S. to immigrant parents from China, Amy Tan grew up in the San Francisco Bay Area in a succession of twelve homes by the time she graduated from high school. At age 15, she lost her older brother and father to brain tumors. I used to brag that I never got sick. I rarely came down with colds or the flu. I had health insurance for catastrophic illness and only used it once, for surgical repair of a broken leg, the result of heli-skiing, the sport of a vigorous and fearless person.
But in 1999, all that changed. I learned what it is like to have a disease with no diagnosis, to be baffled by what insurance covers and what it does not, and to have a mind that can’t think fast enough to know whether a red traffic light means to press on the gas or hit the brakes. I have late-stage neuroborreliosis, otherwise known as Lyme Disease.
The neurological part reflects the fact that the bacteria, a spirochete called borrelia burgdorferi, has gone into my brain.
My case is in many ways typical. Like many, I had little awareness of Lyme disease.
I did not think about Lyme because I live in California, at least that’s where I file my taxes. For a good long while, it did not seem significant to me or to others that I also have a home in New York and that I spent weekends in upstate New York. Then again, one does not need to live on the east coast to get Lyme.
You can go hiking in the woodlands of Mendocino, Sonoma, Santa Cruz, and the Sierra foothills, just to name a few hiking spots Lyme ticks and I are fond of.
In 1999, Lorraine Bossé-Smith began to have strange symptoms. She started having horrible joint pain and swelling. After about nine months, she could barely hold a glass of water in her hand. “I had fatigue, muscle weakness and started getting a chronic cough,” says Lorraine, a book author, motivational speaker, life coach and AFAA certified personal trainer/fitness instructor. “Little did I know that it would be a frustrating and long journey to not only find out what I had but also curing it.” In March 2006, Lorraine was finally diagnosed with Lyme Disease.
“I finally took matters into my own hands and began researching on the Internet. Lyme’s was the disease that matched my symptoms most closely, and I had been on a hike seven years ago up on the Central Coast in California where we lived for four years that was infested with ticks.” Lorraine took an on-line quiz with the Canadian Lyme Disease Foundation and matched many of the symptoms (www.canlyme.com).
She proceeded to take this to her local doctor and a Lyme Disease specialist in Northern California and had the appropriate tests. After six years of horrendous pain, Lorraine was told she had the Borrelia burgdorferi in her system; she had Lyme Disease. “I had an array of emotions: anger, relief, frustration, disappointment and fear. And the big question was ‘now what?’ Treating Lyme’s is just as difficult as diagnosing it. Old school thoughts are that it can’t be cured, but the medical community continues to learn more about how to treat and beat the disease. Lorraine chose to combine a natural treatment plan with traditional medical protocol to ensure the eradication of the bacteria. http://spryliving.com/articles/lyme-disease-symptoms-recovery-1/
I first saw this DO at the end of November 2007. I was put back onto antibiotics. A month later, by my own request to try to not take antibiotics, I was put on the Zhang protocol to fight co-infections with Babesia and Bartonella. Progress was slow, but progress was made. I started to regain my strength, appetite and ability to look after my children.
By April of 2009 I was off all supplements and I was able to start exercising again.
By November 2010, I ran the New York City Marathon in 4:12:58. In 2012, I completed ten races ranging in distance from 5K to half marathons and triathlons. I hit my first PR for that year in July running a 6:58 pace mile and in October I qualified for the Boston Marathon and will be running Boston in 2014. In 2013, I completed 4 triathlons, 4 road races, achieved 2 PRs for 10k races (46:27 and 45:35), ran 24 miles as part of the Reach the Beach Relay, and on October 13 I ran the Chicago Marathon finishing in 3:42. http://www.humanthology.com/lyme-disease/2014/9/15/running-for-her-life-a-lyme-disease-survivors-story
Katina Makris, CCH, CIH, has worked in natural healthcare for 30 years. She is also an award-winning author of Out of the Woods, Healing Lyme Disease, Body, Mind & Spirit, from Helios Press, former board member of the Council for Homeopathic Certification. She is the keynote speaker for the Lyme disease Ticked OFF Music Fest Series, and host of “Lyme Light Radio ” on the Dr. Pat Show syndicate. She is a graduate of Duke University and the Stillpoint School of Integrative Life Healing. https://www.everydayhealth.com/columns/my-health-story/surviving-lyme-disease-missed-diagnosis/
At only 15, Amanda was experiencing a violent form of Lyme Disease which dramatically increased her sensitivity to light and sound, completely robbed her of energy, and ultimately left her unable to walk for a year and a half. After a three year uphill battle against conventional medicine with little improvement, Amanda had accepted what seemed to be her fate; she would forever live suffering the effects of Lyme Disease and possibly never walk for the rest of her life. https://www.youtube.com/watch?v=sFm6uWcHPgM
Then she met Dr. West.
If you were touched by this film, consider sharing it with others. There is hope for those suffering at the hands of this tickborne illness.
Learn More about The West Clinic:
http://westcliniconline.com/
Most patients are suffering when they arrive at our Naples, Florida clinic. After numerous treatments at numerous health centers, no one can figure out what’s going on. At Lifestyle Healing Institute®, we specialize in the five percent for whom nearly every treatment, no matter what’s done, seemingly fails. We heal the debilitating symptoms caused by Lyme disease and Chronic Lyme disease. Below are few stories of recovery from our patients and some insight into what makes us different from other healing centers. https://lifestylehealinginstitute.com/?gclid=CjwKCAjwi6TYBRAYEiwAOeH7GcAT7m2eGj37Dxtd4W2CU_2kN6x6-17dNQ_agXHdHyTZaBSOvLHWEhoCe4IQAvD_BwE
Heal Lyme Disease Though Your Gut http://www.organiclifestylemagazine.com/issue/15-lyme-disease-holistic-protocol-to-completely-rebuild-the-immune-system https://www.prohealth.com/library/healing-the-gut-a-crucial-component-of-recovery-from-lyme-disease-4254
http://lymelesslivemore.com/gaps-gut-health-and-healing-chronic-lyme/ https://www.youtube.com/watch?v=8Bb2UfxBuac
Mindfulness is the art of simply being present.
From Oprah to Phil Jackson to Anderson Cooper, it’s an art practiced by some of the world’s most successful people.
Brought to the west by Zen Buddhist Monk Thich Nhat Hanh, who was once nominated for a Nobel Peace Prize by Dr. Martin Luther King Jr., mindfulness has recently gained mainstream popularity in both the media and in mental health treatment.
This film features insights from Deepak Chopra, Thich Nhat Hanh, Sharon Stone, Oliver Stone, Cesar Milan, and many more. Watch it and learn how to embrace mindfulness in your own life! https://tubitv.com/movies/372297/mindfulness_be_happy_now