What is Lyme Disease
Lyme Disease is caused by the bacteria Borrelia Burgforferi. It is transmitted from ticks to humans (and animal) when they are bit. Symptoms of Lyme Disease vary widely and can occur almost immediately after being bit or take years so rear their ugly head.
Not everyone who gets bit by a tick will contract Lyme and now everyone who contracts Lyme knew that they were bit. Less than 60% of Chronic Lyme patients remember being bit or seeing the classic ‘bulls eye rash’. This is why chronic Lyme is so wide spread, without the knowledge of a bite or a visible rash, Lyme symptoms may be overlooked, ignored or even misdiagnosed. Sometimes for years!
Lyme was first reported in Europe (at least based on what I have read) in the late 1800’s. It wasn’t reported in the United States until about 1969 with a case in Wisconsin. In 1975, a group of children and adults in Lyme, Connecticut started experiencing strange arthritic symptoms and the history of Lyme in the US was recorded.
Polly Murray was one of the first Lyme Warrior moms; when she noticed that her kids and other neighborhood children were coming down with juvenile arthritis she went to the authorities, contacted the media and did all she could to bring awareness to Lyme Disease. By 1977 there were 51 confirmed cases of Lyme Arthritis, which were later linked back to the Black Legged Tick.
In 1982, Will Burgdorfer, PhD. discovered the bacterium that caused Lyme, Borrelia Burgdorfen.; this bacteria is a spirochete, or cork screwed shaped bacterium. The literal meaning is ‘coiled hair’ and that pretty much describes their appearance.
Spirochetes are some of the smartest bacteria around. Scientist believe there are 15 groups of spirochetes, spread among 4 families in the phylum. They believe there are around 300 species. 4 have been known to cause human disease.
Spirochetes are tricky, they are smart and do what they can to survive, including altering their physical form. They can take on an encysted form -enclosed in a cyst- and can stay like this until conditions for survival improve. A spirochete can survive in this cyst form for years and cause no symptoms to the patients. They can also burrow into cell walls and wreak havoc on the body and cause intercellular infections. This stage is the hardest to diagnose and people are often misdiagnosed. They also band together to cause a biofilm. Imagine a sticky ooze coming together to form a solid layer of goop. When spirochetes want to protect themselves from antibiotics or other forms of treatment, this is what they do, they surround themselves with this thin layer of goop. Lastly, they can drill into dense areas of tissue and bone where it can hide from antibiotics. You can see that spirochetes prove incredibly difficult to kill. Therefore, Lyme is so hard to diagnose and treat.
We will talk about testing and false negatives on another day, but I just wanted to say quickly, that the behavior of the spirochetes is why getting a true positive test is hard. Right now, they are only testing the blood, but if the spirochetes are hiding out in the bone or tissue, chances are they won’t show up in the blood. They know how to survive and they know how to hide, this is not good for someone suffering from Lyme.
Lyme is found on every continent except Antarctica. It is found across the United States, with particularly high incidence in the East, Midwest and West Coast. Rates are increasing significantly each year, but it is unsure if it is due to disease spread or better diagnosis. We were told by 2 of our doctors when we were trying to get a diagnosis for Paige that there was NO WAY she could have Lyme Disease because we live on the West Coast. They said that Lyme in rare here and that the chances of her having Lyme were beyond slim. Upon research, we learned that is just not true. There are 46 different tick species in California and 6 of those are known to regularly attach to humans. The confirmed cases of Lyme that are reported to the state health authorities in California are between 60-97 cases a year. You may think, hmm that isn’t very many since the population of California is nearly 40 million. But keep in mind, only about 30% of Lyme sufferers are given an official diagnosis of Lyme and even less are reported to the Dept. of Health. It is thought that less than 1% of confirmed cases are actually reported. Since the mainstream medical field doesn’t acknowledge Lyme for what it is, most patients seek help with non-traditional medicine. Treatment and diagnosis from these non-traditional doctors is not recognized by the CDC or Health Department, therefore cases of Lyme are MUCH greater than what is reported.
There are currently two types of Lyme, acute and chronic. If someone notices a bite and/or rash and gets treated quickly, the chances of the Lyme becoming chronic are less. But this window can be very short for some people. The Lyme Bacterium can enter the brain in less than 24 hours. We learned a little about the Lyme bacterium and spirochetes above and we know that they can lay dormant for months if not years. So, you may not even know that Lyme is taking over your body until it is too late. That was the case with Paige. We never saw a bite or a rash, she didn’t show the classic flu like symptoms, she never ran a fever; just one day out of the blue she collapsed on us. The spirochetes had already invaded her brain, her heart and her muscles before we ever saw a symptom.
Acute Lyme if treated early, can be cured. Usually with a 1-3 month dose of antibiotics the person will be symptom free and live a normal life. It isn’t so easy with Chronic Lyme. Chronic Lyme patients can undergo treatments for years and still never be symptom free. Once Lyme goes chronic, the best you can hope for is remission, as it will never be cured. Once you have Chronic Lyme you will always have Chronic Lyme.
Treatment plans vary as greatly as the symptoms for Chronic Lyme. Some say you can only treat it with antibiotics while others swear by the natural route, and there are some that use both together. I don’t think there is a right or wrong way to go about treating Lyme, it just comes down to what the patient can tolerate and what co infections they have. For Paige, she has Lyme with 4 co infections and 19 viruses, we can’t just use a high dose antibiotic to kill the Lyme, we must also go after the other infections and viruses in her body. We will talk about co infection on a different day, but the co infections are really worse than the Lyme itself.
Finding a doctor who will work with you and find a treatment plan that is successful is key to treating Lyme. As symptoms change, you may need to change the treatment plan, and you need a doctor who is willing to do that. A study published by John Hopkins University said that more than 63% of patients treated for Lyme Disease continue to have debilitating symptoms. Even when extending the use of antibiotics by 61%, they did not see a decrease in symptoms. This is why finding a doctor who will work with you and your body is so important. Lyme can’t be treated the same for everyone and what is standard isn’t working.
Tomorrow we will learn about co infections and how they are devastating to a Lyme sufferer.
Remember to share this blog far and wide, we really need to spread Lyme Awareness.
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**disclaimer, I am not a doctor or medically trained in anyway. I am just a mom trying to get her daughter well. All information in this blog can found on the internet. All pictures were pulled from google images or Pinterest, I do not claim to have rights to them or that they are my images**