Happy Wellness Wednesday everyone! I hope you’re having a great week. I wanted to take some time today to talk about common myths about Lyme Disease, being that it is Lyme Disease Awareness Month!
When I first found out I had Lyme Disease, I was pretty upset because I had had chronic illness for a while and I knew several people who struggled so much with chronic Lyme. I also knew that I was past the point of the antibiotic being effective (after 3 weeks of exposure the antibiotics cannot kill the infection because the bacteria has formed a biofilm to protect itself – this is when the disease becomes chronic). Once the infection becomes chronic, it is EXTREMELY difficult to kill. People spend their lives and their savings fighting this disease. I knew it was going to be a difficult road to get better. I was sicker than I could ever even imagine one could be. It was really terrifying and it’s uncomfortable to write or talk about because I know that looking at me, you would never know and you might be inclined to think I’m exaggerating. But, ask any chronic Lyme Disease sufferer, and I guarantee you they will tell you the same exact thing. I quickly learned that there are so many myths surrounding Lyme Disease, how it is contracted, detected, and treated.
MYTH #1: You don’t have Lyme Disease unless you get a Bull’s Eye Rash. This is wildly untrue. Less than 50% of Lyme cases present a Bull’s Eye Rash – myself included. I think you’re actually very lucky if you get a rash! If not, a lot of doctors won’t know what to test you for. They often do not test for Lyme and will misdiagnose you. So, if you see that Bull’s Eye Rash, get to a Lyme Literate Doctor (LLMD) or a Naturopath who specializes in Lyme Disease, right away!
MYTH #2: Ticks are only found in the woods. Ticks unfortunately are everywhere that animals are. Not just deer either! Ticks are on birds, mice, dogs, raccoons, ducks, you name it! We live in a neighborhood that has a ton of houses in it and cleared out lots with few trees. Only once in a while do we see deer near our neighborhood, but we have found ticks on Barkley and our neighbors complain about it, too. You can get a tick just walking to your mailbox. You can get one in the city. Think about how many birds hang out on the streets of the city. They’re everywhere now and you have to be diligent about checking your skin.
MYTH #3: Ticks are only found in the Northern States of the U.S. Ticks have been found and confirmed in all 50 states. There are some states that are more heavily populated than others, such as Pennsylvania, Connecticut, New York, New Jersey, New Hampshire, Virginia, Massachusetts, Wisconsin, Minnesota, and Maryland. Currently, Pennsylvania ranks as the state with the most cases of Lyme Disease (why do I live here still!?!). But, they have been found all over the United States and other countries have Lyme epidemics, too!
MYTH #4: You can only get Lyme Disease from a Deer Tick. Many insects now carry Lyme Disease. Mosquitoes, flies, fleas, mites and spiders have also been found to carry Lyme Disease. My doctor actually contracted it from a spider! I always use a deet-free repellent when I go out on a walk, or spend time outdoors!
MYTH #5: You cannot contract Lyme Disease in the winter. Ticks can live for two years and survive very cold temperatures. It has to get below 10 degrees Fahrenheit for quite some time for ticks to die off. With climate change, temps during the winter haven’t been falling this low. Although the number of reported cases drop, there are still many reported. This is likely because people spend less time outdoors as well.
MYTH #6: The test came back negative, so I don’t have Lyme Disease. If only this were true… Unfortunately, our testing for Lyme Disease is pretty much useless. I don’t mean to sound like a Debbie Downer, and I’m really not one, but this is a fact. There is no definitive test that can tell you that you do not have Lyme Disease. The standard test that your doctor will run on you called the ELISA test is less than 50% accurate! No joke. The Western Blot that is used by medical practitioners is slightly more in depth, but still not accurate. If your test comes back positive, you definitely have Lyme Disease. If part of your Western Blot comes back positive, in my opinion and the opinion of doctors I trust, you most likely have Lyme Disease. In some cases one of the 5 markers on the Western Blot can interact with the EBV virus, which most people with Chronic Lyme tend to have anyway. So, it may be the mono virus is activated in your system, but if you are presenting clear Lyme Disease Symptoms, it is probably Lyme. You should always get your testing done by a Lyme Literate Doctor or a Naturopath who specializes in Lyme Disease. I cannot stress that enough! Do not just go to to your general practitioner. They are not educated in Lyme Disease and are often misinformed. They will probably tell you the test is fine, and so are you. They might prescribe you a short dose of antibiotiocs. You always need 6 weeks of Doxycycline if you have caught it early. If not, I would recommend seeking the help of a naturopath who specializes in Lyme, because at this point, you are past the effectiveness of the antibiotic anyway. Continuous use of antibiotics can really do a number on your gut and immune system and you will end up damaging your body even further by going this route. There is a lot of research to back this up. If you’re considering your treatment options, be sure to do your research first.
On a separate note on this… if you have the tick (when you remove it, remove it very carefully with tweezers by the head. Do not bend or twist it, you could leave parts of the mouth in the skin, and that’s not good) you can send it out to be tested. But, you want to make sure that you get a full Lyme panel that includes co-infections, not just Lyme Borrelia. This testing is much more accurate than human testing.
The reason why Lyme Disease is so often misdiagnosed is in part because the testing is so horrible. I can’t tell you the number of people I know and have spoken to that have had misdiagnoses, including myself. It can often be misdiagnosed as Lupus, Fibromyalgia, Autoimmune Diseases of all kinds, athritis, Alzheimers (and early onset), Chronic Fatigue Syndrome, Bells Palsy, Lou Gehrig’s Disease, and more. If you receive one of these diagnoses, I would highly recommend you go see a Lyme Literate Doctor (LLMD) or Naturopath who specializes in Lyme to rule out Lyme FIRST! It can definitely be lurking and causing all of these issues for you. You gotta find the root cause behind your symptoms and problems! As you can imagine, there are so many people living with Lyme that don’t even know it. It really is a huge epidemic and it’s extremely upsetting that there is very little awareness or action on officials’ parts who are well aware of it. The CDC knows. There are so many lawsuits against them and so many activists trying to change things, but there is corruption and money involved, and the people are suffering for it. If you are interested in learning more about this, Google Lyme Cryme and/or Lyme Disease Dearborn Scandal.
MYTH #7: Antibiotics cure Lyme Disease. I hate busting these myths. I want to have faith and trust in our medical system more than anyone. I want to believe that they have my back when I get sick. But, when it comes to chronic Lyme Disease (and other chronic illness in my experience and the experience of so many others) it’s just not true. If you catch Lyme Disease right away and take a 6 week dose of Doxycycline – and you are relatively healthy person otherwise – you very well may be just fine after those antibiotics. However, more than 20% of patients continue to have Lyme Disease symptoms and often times worsening symptoms, after receiving the CDC’s standard 28-day course of antibiotics. They will often tell you, it’s not possible that you have Lyme after these antibiotics. They will probably tell you it is something else you have and send you off to another doctor. You might even test positive still! But, you’re not crazy. The antibiotics do not always work. If this happens to you, find yourself a naturopath who specializes in Lyme Disease. (No, I’m not going to stop repeating myself! LOL!)
I’ve had years of treatments and I’m still not able to exercise more than what my grandmother did in her 80s. I still have a lot of pain, digestive problems, organ and tissue problems and damage, chronic fatigue, muscle pain, joint pain, brain fog, neurological symptoms and more. So, if a friend tells you “I have Lyme Disease” please don’t respond with “Oh, that’s good! At least it’s not cancer! Lyme Disease is curable!” (This has happened to me more times than I can count, as I felt like I was literally going to die any day!) As much as we desperately want to be cured, it just isn’t that easy. And putting us on the spot like that to have to be the bearer of bad news, is an awful feeling. It makes us seem like we want to be sick and we want to complain about how awful this disease is. It might even make you think that we are seeking sympathy and attention. That’s not the case. We are just scared and we know that this is much bigger than what the rest of the world believes it to be. It can be a very lonely place to live when the people around you don’t understand and can’t relate – even worse when they don’t believe you. We look fine on the outside, but inside it feels like our bodies are a torture chamber. So, if you are in a supportive role of a Lyme Disease sufferer, just know that they are facing an incredibly difficult battle if they did not catch it soon enough. If I had to describe what chronic Lyme Disease is like, I would say that the entire experience is just inhumane.
MYTH #8: The tick must be attached for 48 hours in order to contract Lyme Disease. My Lyme doctor who I’m so thankful to have crossed paths with, and knows more about Lyme than anyone I’ve ever come across (and we are talking about A LOT of people), says that the tick does not have to be attached for long AT ALL for the diseases to be transmitted. He says if there is any attachment at all, you are at risk. There is other research that claims the same. I always err on the side of caution with this. Lyme Disease is a deadly, debilitating (not to mention extremely expensive because nothing beyond your first course of antibiotics is covered by health insurance) disease and not something you want to take chances on.
Myth #9: You only contract Lyme Disease from a tick. Ticks carry many different kinds of pathogens. It is very common for them to carry other strands of bacteria or viruses called “co-infections”. Co-infections are infections seen commonly along with Lyme that are tickborne. These include Bartonella, Babesia, Rocky Mountain Spotted Fever, Erlichia, Mycoplasma, Rickettsia, Brucella, and many more. I myself had 9 co-infections. Mycoplasma is one that is often overlooked but can cause SO MUCH damage. It’s the smallest of bacteria and it is really dangerous. Be sure to ask to be checked for co-infections if you have been bit. You may not have contracted Lyme, but might have contracted co-infections.
MYTH #10: Lyme Disease can not be transmitted from mother to baby. Research has shown that Lyme Disease can pass from mother to child while the child is the womb. The child may not show signs of the disease for many years. Often times, the disease rears it’s ugly head when the child’s immune system is weak and the infection begins to spread. They may experience strange pains and sickness that puzzle their pediatricians.
BONUS: It’s pronounced Lyme Disease, not “Lyme’s”. No “s” on the end of Lyme 🙂
I am sorry if if this post was hard for some of you to read. I think hearing news like this can be shocking. You might have mixed emotions about it and feel like this can’t possibly all be true. She’s got to be over-exaggerating a bit! I wish I were, friends. I honestly feel like we are all walking around with an enormous predator waiting to attack us just outside our doorstep. We flirt with the devil everyday. I do it, too! We have to keep living our lives. But, it’s best to live with the knowledge of this so that we can do our best to prevent it.
With all of this being said about chronic Lyme not being curable with antibiotics, I’d like to take a moment to talk about that. I 100% do believe in full healing from Lyme Disease. There are new treatments and technologies that are out and being experimented with right now that are really exciting! There are laser treatments, rife treatments, stem cell treatments, and more being done by alternative medicine that I think have real potential to help people. There are also powerful herbal protocols that have helped so many people! I know that that some of these (for me the laser, rife, and radionics treatments) have really helped me. A couple years ago I felt like I was likely going to die from this long before I would ever want to leave this Earth. But, I was so blessed to have people come into my life when I raised up my red flag for help, and I’m in such a better place than I was years ago. I was mostly bed ridden and in excruciating pain day in and day out for years. It does a number on you. I’ve had to learn how to heal physically, emotionally, and spiritually – and I’m always in a state of learning to heal. I believe in all of our abilities to make a comeback and to heal from the inside out. I like to think of it as a long walk. There doesn’t have to be a destination of perfection at the end. There just needs to be bits of uncovering things that will lead to more and more healing. Like layers of an onion – you peel one at a time. Take time to explore your emotional and spiritual healing. Read books that help you stay in the best possible mindset you can be in. (If you are looking for suggestions, please reach out, I have some that I really like! ) Hopefully you can find ways to stay as comfortable as possible while reaching a better place. It is so hard to be in so much pain everyday with no end in sight. But, I can tell you from my experience that it can and does get better eventually. Not perfect, but improved, and with time things continue to improve. Stay the course. All the while, the things we learn along the way will shape and form us to be even better than we were before.
Sending you all so much love and healing today. Especially to my Lyme Warriors and to the ones who love and support them. <3
I came across your blog when someone else shared it on Facebook. I battled Lyme Disease for several years and could not tell you when I specifically contracted it, but I can tell you I had it for easily 6 months to a year before I was diagnosed. My original PCP was dismissive and as a patient with this being the first major health issue I’ve dealt with, did not fight enough for myself to get the needed tests. I was lucky enough to find a specialist in my area that really helped me get back my life.
To your point about the disease forming a biofilm after a few weeks and antibiotics being ineffective, I can tell you the regiment I was on was antibiotics and supplements to break down that biofilm. If you’d like I can provide you the list of antibiotics and supplements I was on for easily 2 years if it helps anyone else out.
For those who happen to be near Franklin, TN that may be dealing with Lyme please contact Cool Springs Family Medicine as they are beyond helpful in fighting Lyme.
Thanks so much for this comment, Brian! I’m so sorry you had a similar experience and battled Lyme for so long, too. It is such a difficult disease.
Yes, I have used biofilm busters, too! They do help. I am so glad that you sound like you are doing better?
Thank you for the referral for any TN readers to Cool Springs Family Medicine. It is so good to know of places that treat people for Lyme and don’t send them away. I will definitely hold on to this info!
Again, thanks so much for reaching out and sharing a bit of your story! It means so much to me and to the readers, too! I hope you’re feeling well these days!!