*Originally published 5/31/18*
For the last day of Lyme Disease Awareness Month, I decided to gather a list of tips for those just starting the Lyme journey, or maybe those who are in the journey but stuck (with the help of some lymie friends).
It is going to be expensive. This is first because it is the hardest thing to grasp. You will not find a Lyme literate doctor who takes insurance. Most appointments will be more than $400 and sometimes you have to go twice a month. Is this right? No, but you have to do what you have to do to get better.
Watch Under Our Skin. I say this to all new lymies. This documentary will help you to fully understand what you are getting into. It explains the controversy, the symptoms and the process. It may be daunting at first, but I promise it is one of the best source of information.
Question and research everything. When a doctor tells you something, research it. Go in to your next appointment with a list of questions and do not leave until they are all answered. One thing you will learn through this journey is that the medical world is messed up, so it is up to you to be your own advocate on this journey.
Listen to your gut. If something does not feel right, do something about it. One perk to having Lyme is that we get to really come to understand our bodies better than most people. So if a medicine or food or anything else makes your gut quizzical, change it.
Treatment will be slow. I wish I would have learned this in the beginning. I am an impatient person so I just wanted to go harder with the medicines to make me better faster, but in the end, it hurt me worse. There is no timeline for Lyme treatment because, just like in life, things are always changing.
Do not only focus on Lyme. While Lyme is a big issue, many lymies also suffer from co-infections, Mast Cell activation, mold toxicity, parasites, and more. A lot of times the Lyme cannot get better until these things are addressed.
It is okay to switch doctors. I have switched doctors 6 times. Sometimes you just need a change in perspective to further continue healing. Some doctors do antibiotics, some do herbals, some do both, or some do something totally different, find what works for you. If you do not like something a doctor is doing, or not doing, change. This is your life and your journey so do what is best for you.
What works for one person, may not work for you. Everyone is different. So if someone says a certain regiment worked for them that does not necessarily mean it will work for you. So do not be discouraged. Lyme is an extremely intricate disease that presents itself differently in every case. You are not messed up, you are unique.
You are going to do things you never thought you would. You may have to travel to doctors potentially hours (sometime states) away. You may stop eating gluten, dairy, sugar and who knows what else, and you may even like it. You may try things like acupuncture, aromatherapy or dry needling. At some point, your mindset switches to survival mode and you will do anything to feel better, and that is when the healing starts.
Find your lymie family. I promise we are nice. Find local support groups, or online ones! Finding others who actually understand what you are going through is a godsend. When you have a funky symptom, or need to vent, they are there. They are the shoulder to lean on, even if it is through the internet.
You are going to feel worse before you feel better. This gets very discouraging and hard to remember. The medicines will cause you to have a herx reaction, which basically is all the bacteria having one last surge before they die, which leaves you feeling awful. However, once they are dead, you WILL feel better! Whatever you do not stop the medicine, it is okay to titrate but stopping will just make things worse when you start up again.
Do not underestimate the power of detoxing! I learned this pretty late in my Lyme journey and I wish I would have known so much earlier! Detoxing is amazing (especially since many lymies also suffer from MTHFR which I suggest talking to your doc about)! For the longest time, my detox baths were my saving grace. Now, I use my infrared sauna and it is the best thing that has ever happened to me. I go in as sick Cassidy, and come out feeling so much better! So do not forget to detox!
Last but not least, Do not forget about treating your mental health. Having Lyme disease is going to take its toll on you mentally as well as physically. I highly recommend counseling, or at least talking to someone about what you are going through. Holding it in only exasperates your physical symptoms in the end.
So if you are just starting this journey, or have been fighting for a while, I am sorry, I understand, and I hope these tips help to make your journey easier!
Feel free to reach out to me at any time!
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