Why do we need Lyme awareness at all you may be asking? Lyme disease and Lyme like illness is not even on the radar screen for most people, many in the medical profession included. It is one of the most, misunderstood, mysterious, under studied, under diagnosed and under treated diseases. Those of us who have been treated for Lyme or lyme like illnesses feel the weight of all the mystery and ignorance surrounding this illness. Lyme was not all that interesting to me before I got sick. Today I want to help raise awareness of what Lyme disease is and how to know if you may have it.
Lyme disease is normally thought of as an easy to diagnose and easy to treat illness caused by a tick bite. The general understanding is that Ticks are the only insect capable of spreading the Borrelia Bacteria that cause the illness. Several misunderstandings are that if you have Lyme you will ALWAYS have a bulls-eye shaped rash, and that standard ELISA and WESTERN BLOT testing for Borrelia are gold standard tests that always find it. These very concepts are what keep the majority of sufferers such as myself in a state of ignorance and confusion for a long time – sometimes decades. The largest scientific study ever conducted on Lyme disease patients revealed that less than 50% of them ever recalled a tick bite and even less ever saw the famous bulls-eye rash. It is estimated by the CDC that over 300,000 people are infected every year, but only 30,000 of them ever get reported for a positive test. Those are not favorable odds for those of us who have wondered if we have Lyme. On the East Coast which is considered an endemic area for Lyme disease, I can tell you that estimated millions of people have suffered needlessly at the hands of a false negative test. They battle neurological, digestive and muscular symptoms – for some it is just a handful of things that are minor and for others they have all of the above symptoms and are disabled.
I woke up one morning at the age of 36 and felt like I had the strangest flu bug ever. Crushing fatigue, headaches, stomach aches, muscle pains, brain fog. I knew something was terribly wrong but every doctor I went to see told me they could find nothing wrong with me. For the first few years No one even thought to test me for Lyme disease because I did not see or report a recent tick bite or bulls eye rash. These symptoms came and went and were unrelenting – disabling my life for 15 years before I was ever told I had lyme disease. I was shocked, disillusioned and angry that the medical system I had served for 25 years never picked up on this. They had all told me I had chronic fatigue syndrome, fibromyalgia and a host of other idiopathic or autoimmune diseases that were simply unexplainable and incurable. A few even told me it was all in my head. One told me I had post lyme treatment syndrome ( wait- how does that happen when I was never treated?) It was a living nightmare. And I am far from being the only one who has experienced this. It is estimated that there are now millions of people who have symptoms of Borrelia infection and have just never known it. Maybe they got false negative tests., or maybe like me never tested at all for years. Some were actually tested, got a positive test and were treated with the standard course of antibiotics, only to have the identical symptoms return over and over and be told they have Post Lyme treatment syndrome.
Why the testing is so poor is a whole other blog in and of itself. In a nutshell, they are looking for antibodies and proteins that Borrelia bacteria is known to suppress. IF the infection is evolved enough to suppress the immune response in some people, those people are not going to see a positive immune response on the testing.
So what happens if you do get a diagnosis from one of the very few doctors educated around this illness? Don’t antibiotics like Doxycycline cure it easily? Yes and no. The CDC tells us that 80% of those who get treated within 3 months of the infection will be cured with 3 weeks of Doxycycline. ILADS- the International Lyme and Associated Diseases society tell us that it is more like 60% who get treated right away who are cured. They estimate that upwards of 40% of those fortunate to even get any treatment will relapse over and over. Unfortunately the CDC / NIH has invested zero dollars in research around these issues. IF it were not for the brave doctors, researchers and practitioners associated with ILADS we would still know precious little about this illness or how to help people get well.
Many people are suffering at the hands of ignorance, outdated inaccurate testing, and the refusal of insurance companies to pay for any type of treatment except the standard 3 weeks of doxycycline (ONLY if you have a positive test.) You simply would not believe how many people have spent tens or even hundreds of thousands of dollars trying to get well. Once this illness has settled in for 3 months or more, it is called late stage lyme disease. At that time, 3 weeks of doxycycline just will not resolve the issues. What myself and my colleagues at the Uprooting Lyme clinic in New York have learned is that those who follow a comprehensive herbal and detox protocol do better than those taking years of antibiotics and avoid all the side effects and organ damage that years of taking antibiotics brings.
We have also learned that people have started with their lyme like symptoms after mosquito, spider, Flea and bedbug bites. There are also soft ticks that will bite and drop off within 5-10 minutes so you never see them. I will be writing more about this in the weeks to come. I will be writing about what to do in case of a tick bite, or other bite that results in symptoms. I will also
write about prevention and what symptoms to be on the look out for and other testing options.
I will be writing about Common Co-infections of Lyme disease such as Bartonella, Babesia, Epstein Barr Virus, Parasites and more. You will learn about treatment options and what we have to offer right here at Foundations Wellness Coaching in Cincinnati Ohio. Here are some common signs and symptoms of Lyme Disease:
When First Bitten, These symptoms normally appear in the first two weeks:
Fever
Flu like achiness
New Joint or muscle pain or swelling
Anxiety, panic, behavioral changes in children
Unexplained Crying jags
Headaches and stomach issues
Common symptoms of LATE STAGE Lyme – having gone on for 3 months or more:
Relapsing fevers or other symptoms that come and go without explanation
Joint or muscle pain that moves around from place to place in your body or is constant
Insomnia
Psychiatric issues like OCD, anxiety, depression, panic attacks, mood changes, brain fog
Chronic Fatigue or Fibromyalgia
Unexplainable symptoms of any sort, urinary, skin, lungs, heart rhythm
Ongoing headaches, migraines, Digestive issues, gastritis, IBS, gas and bloating heartburn, many
others
Nerve pain and nervous sensations like weird unexplainable vibration, bug crawling feeling,
itching, rashes, and any combination of one or more of these symptoms.
If you suspect Lyme disease and would like to talk more about your particular situation contact our office!
There is HOPE for Lyme Disease.