You may be very surprised to learn that most of what the general population is privy to when it comes to Lyme Disease….is very wrong. In fact, the majority of what the CDC tells us about Lyme Disease, is grossly ‘watered down’, or not mentioned at all. Here are some important points that need to be corrected. Lyme is so far from being just a simple infection with a bullseye rash…so very incredibly, unbelievably, insanely… far from it.
**I AM NOT A DOCTOR. I must say that. I am however, someone with a lot of personal experience with this hideous illness, and others. Too much, in fact. Thirty seven years worth, three of which were spent almost entirely home bound (still fighting back). So, please read the ‘myths’ below, because if you are new to Lyme, or think you can’t have Lyme because of where you live, or think your primary doctor is capable of treating it…long term, without losing his or her license…again, it is far from being just a simple infection. Please read and pass it on…lives depend on it, truly.
How many of you heard these ‘facts’ before, and this is about the extent of your knowledge regarding Lyme? It’s alright..the average person is right there with you. You typically learn a lot about Lyme…the hard way. Here are the common misconceptions..
1. You will always have a bullseye rash.
2. You can ‘cure’ Lyme with 21-30 days of antibiotics.
3. There is no such thing as ‘Chronic Lyme’.
4. There are only 3,000 new cases of Lyme Disease each year.
5. Lyme Disease can only be contracted in the northeastern, or upper midwestern part of the United States.
Firstly, less than 50% of people infected with Lyme will ever have, or notice a rash, or find a tick on themselves. Some develop a rash that looks nothing like a bullseye. Secondly, there is no cure for Lyme Disease. Once infected, it is with you for life. Proper treatment of the disease, and any possible co-infections can only be put into remission. The first course of treatment, by CDC guidelines, is Doxycycline. This is a bacteriostatic medicine, meaning it will slow down the bacteria, but not kill it. Why is this their first choice? One of the many things that leave us all scratching our heads when it comes to Lyme. It can actually lie dormant for many years until something like a trauma, a virus, extreme stress, or even a vaccine can reactivate an infection. In my youngest daughter’s case, hitting her head activated it, and it went (mostly) dormant again on its own. It is best to avoid further exposure to infected biting insects (more than just ticks), because each subsequent bite can cause more severe symptoms than the last, and treatment can be more difficult. Third, there are an abundance of research articles, and expert accounts of proof that Lyme Disease can be ‘chronic’. Dr. Alan MacDonald has successfully proven this, and published it in 2012. If the infection is found after, or lasts longer than 6 weeks, this is when it is considered chronic. Well, at least amongst the caring, enlightened doctors…such as some of our beloved LLMD’s (Lyme Literate MD), and groups like ILADS (International Lyme and Associated Diseases Society).
Chronic, or late stage neuroborreliosis (neurological Lyme) is difficult to diagnose, treat and can become debilitating. The Borrelia spirochete (spy-ro-keet) is a corkscrew-like bacteria that invades every part of the body, burrowing itself, and even creating a protective ‘biofilm’. They form these cyst like structures, with protective films in order to survive, making themselves resistant to antibiotics. In an acute infection, caught after noticing a rash, and/or finding a tick in your skin, receiving antibiotics for 21-30 days makes some feel better, but for so many, an extended period of antibiotics is necessary but almost always difficult to attain. Insurance does not cover Lyme Disease beyond 30 days. It is the ONLY disease with a time limit on treatment. Most LLMD’s do not have the luxury of openly treating Lyme. Countless doctors have lost their licenses for helping people with late stage Lyme, get their lives back. They rely on word of mouth from loyal patients, to help as many people as they can…with no insurance involvement (that’s right..after 30 days, no coverage). Seems completely unethical to keep people from receiving necessary treatment and letting them suffer, right? Happens every single day, for millions around the world. This anger fuels my passion to want to help educate and advocate. I will share my story in a separate post, and you will, hopefully, better understand what has fueled my fire. It’s not just my fight though…so many that are sharing the same feelings of frustration, despair, fear, and a whole lot more. That roller coaster also takes you up to good days, finding a great doctor, hesitant happiness, and yes…..hope. There really is some, and we should all pass it around.
The CDC has raised the number of new cases each year, from 3,000 to 30,000, and now 300,000. It is believed to be far more, perhaps well beyond a million. Not every doctor reports a Lyme case to the CDC, in fact, that is not the ‘norm’ for the majority of doctors. Most LLMD’s aren’t going to report it, and bring attention to themselves, thankfully..because we need them! If they are the ones treating most Lyme cases, imagine how many are actually infected….and so many more who are infected and have no idea (yet).
Finally, it is complete nonsense that Lyme Disease can only be contracted in the northeastern, or upper midwest areas of America. It can be contracted in all 50 states, and on every continent except Antarctica. Europe carries some different strains of Borrelia, that have been reported to cause more neurological damage. In the southern region of the US, there is a Lone Star Tick, which can activate mast cells, and make those infected suddenly allergic to red meat, or even milk products. *I was recently told that Lone Star ticks have been reported in New Jersey, so it may not be ‘just’ a southern tick.
I hope I can help shed some light throughout this website. I will eventually cover the basics, from symptoms and testing, all the way through to theories and the complexities of each individual, and associated infection and various forms of treatment. We are still just skimming the surface…