If your health is in a place where you think it’s possible you have Lyme Disease, I am really sorry. This disease can be incredibly difficult to endure, and I wish you weren’t experiencing symptoms. Please know that you are not alone in this.
(I want to preface this post by explaining that I am not a doctor and am not able to diagnose, prescribe a treatment plan, or give medical advice. The purpose of this post is to share insight gained from my own experiences.)
When I first realized that the symptoms I was experiencing could be Lyme Disease, I did a lot of research to determine the best course of action to take, but it wasn’t easy to find accurate information. There were conflicting opinions everywhere.
Often times, even if symptoms would suggest Lyme as a possible culprit, doctors don’t seem to recommend testing. I’ve seen stories of hundreds of people in Lyme Disease support groups who went to their doctors with a whole list of symptoms, but never did their doctors mention Lyme as a possible culprit.
At least once a week I get an email from someone who has stumbled upon the blog and thinks they may have Chronic Lyme Disease. They aren’t sure what to do for testing or treatment. Their doctors either have treated them with two weeks of antibiotics and said they were cured, or they were never even checked for Lyme in the first place. Now these people are at a place of being debilitatingly ill and unsure of what to do next.
This breaks my heart.
People are suffering every day.
You may be one of them.
And, I am so sorry.
I hope that some of this information will be useful to you as you seek to find answers for the symptoms you experience.
What to Do if You Think You Have Lyme Disease:
First of all, if you recently got a tick bite, I’d suggest going to your physician to ask for antibiotics, especially if you live in an endemic area for Lyme. Explain when you got the tick bite. If you got a bullseye rash, show that rash or any pictures you may have of it (not all people get the rash). Going to your doctor at the beginning, especially if you have the rash, can help you prevent the disease from becoming chronic, even if you don’t have symptoms yet! Your doctor will likely do blood work, which may or may not be accurate.
This post on the International Lyme and Associated Diseases Society’s (ILADS) website contains more information about what to do if you get a tick bite, from removal to treatment considerations.
If you can’t recall a tick bite or the bite was a long time ago, some of these other steps may be helpful for you:
1. Start tracking symptoms
You’re going to need a list of symptoms if you choose to seek treatment. Now is a great time to start compiling your experiences in written form. Think back months, or even years, ago. Write out the things you have experienced recently. Gather as much information as you can about your past and current state of health.
2. See a doctor (preferably an LLMD)
Get an appointment with a doctor. I’m going to be really honest with you here. The general consensus in the Lyme community is that it’s crucial to see a Lyme Literate Medical Doctor (LLMD). It might be more convenient (and cheaper) to see someone locally who is covered by your insurance plan, but it may also be necessary to see someone who specializes in Lyme Disease if you want solid treatment.
I chose my doctor because she not only specialized in Lyme Disease, but she treated people who had conditions like Fibromyalgia, Chronic Fatigue Syndrome, and hormone imbalances. My symptoms were also in line with those conditions, so whether or not she determined I had Lyme Disease, I knew I was going to the right place for care.
I found my Lyme Literate Medical Doctor through the ILADS Doctor Search page. On the page, you can submit your request to find members of ILADS in your area. They will then send you an email with a list of possible doctors. I researched all of the doctors on the list and chose the one I felt most comfortable with who had openings for new patients. Sometimes LLMDs have long wait lists.
Going to my LLMD was the best choice I made in finding help for my symptoms. She was incredibly thorough and performed both a clinical examination and blood work to get to the root of my physical problems. Lyme Disease testing was done through the IGeneX lab. They specialize in tick-borne diseases.
3. Gather the necessary resources to make it possible to start treatment
Many LLMD appointments are not covered by insurance or are only covered in a small portion after submitting a claim at a later date. The high costs can pose an obstacle for those are who are sick and need help. If you feel, after prayer and consideration, that seeing an LLMD is the right step for you, start thinking about how you’ll pay for treatment. This might mean you need to get creative, which I know is hard with debilitating illness!
I had to deplete my entire savings in order to pay for treatment. It was money I thought I’d put toward a downpayment on a house or my next car. While some may balk at the prices of LLMD appointments, I found it to be worth it. My life was at stake. It wasn’t ideal to have only a small amount of my appointments covered by insurance, but I wanted to get better. Going to an LLMD was a risk worth taking.
4. Enlist the help of people in your life
Be honest about your condition and ask for help. This is so humbling, especially when they might not understand what you’re going through. When it comes to paying for treatment, other people may be of great assistance. If you are involved in a church, it could be beneficial to be upfront with your pastor and the other members about your condition. They may have ideas for how the congregation can support you.
5. Keep pressing for answers and be your own advocate
If your experiences with doctors are not positive, please do not give up. It can take a while to find the right doctor who will understand and be able to find the right treatment plan for you. I know what it’s like to feel like giving up, but I encourage you to keep going. Keep researching. Keep asking questions. Learn as much as you can, and remember to advocate for yourself.
Know that not every treatment will work for every person. We are all different, so what has worked for someone else might not necessarily work for you.
Be prayerful in every step of the process as you seek treatment. I know that with brain fog and the craziness of symptoms it may feel like God is distant. I’ve been there. But, it’s important to ask God for direction and peace about the steps you take. Treating Lyme Disease is a new territory, and we need wisdom to make good choices. God will provide the wisdom we need (James 1:5).
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