I wasn’t quite sure what to write here. I am often asked what I did, what I’m doing. It’s a complicated question, really. And then I received a message from a fellow Lyme patient, and the conversation sums it up.
So here goes:
“Hey there — I am in a current state of very lost and confused and frustrated and saw your post recently that you have been cured of Lyme? I got excited and happy for that!! and wanted to know if you wouldn’t mind sharing what your protocol was that got you where you are feeling pretty darn good, and how long it took, as much details as possible would help me tremendously. Did your doctor have you rotate meds every few months or were you on the same ones the entire time? Did you do IV just orals? Thanks so much.”
I know how you feel. I was where you are. The best advice I can give you (without writing a novel, lol) is to relinquish all expectations. This disease is so complex, and still so misunderstood, that you really can’t put any definitives on it.
It affects every person differently, depending on how long they have been infected, what co-infections may be present, the state of their immune system, and their genetic make-up. It also depends on the state of their mental and emotional health, their relationships, whether they have children, their environment, their income or lack thereof.
The most important lesson I have learned in being successful with this disease is to learn how to take care of myself, inside and out. And even deeper than that, I have learned that I have to do it every day…not just in between things I’m doing or being busy.
Short version of my story, I was infected somewhere between 11 and 16 years ago. I was misdiagnosed (symptomatically) for at least 5 years, could be ten. I was on Doxycycline twice a day for 11 months. Then, I struggled with Candida (and nutrition) for 6 months. I still continue to struggle with nutrition to this day.
When I eat well, I feel better. When I don’t, I don’t. When I take care of my physical, emotional, mental, and spiritual health: all aspects of me….I feel fantastic.
Until we have an accurate test, I will never truly know if Lyme still inhabits my body. But, I won’t give it permission to be there by saying I am in Remission. I am Lyme-free until I’m not. Right now, there is no sign of it.
So the moral of the story is: learn to take care of your self. All of you. Take each day one step at a time. Moment by moment. Celebrate the little successes regardless of if you go backwards. A dear friend of mine told me when I was starting to come out of my worst time and getting better, “Be cautiously optimistic.”
Because there are so many ups and downs during treatment, you have to be willing to accept that. Don’t get overly excited on improvement, and don’t let the down moments take you with them. It is only temporary. Don’t get caught up in the details of your experience. Just be there.
If your highs are getting higher, and your lows or not as low, then you are improving. Allow yourself to grieve your old life, but don’t get stuck in it. Allow yourself to have the fear; just don’t allow it to envelop you. Allow yourself to be where you are, feeling the way you are feeling with no judgment on it. And then embrace the path that will ultimately lead you to a better and richer life because of what you have endured.
Focus on what you CAN do. Let go of what you can’t.
Never lose hope, or determination.
Find something to be grateful for every day.
I can’t tell you what protocol is the best one, because there is no one way. I can’t tell you how long it is going to take for you or how bad it may get. It is your journey and your opportunity. Learn as much as you can about the disease, about nutrition, about all aspects of yourself.
Your success, regardless of what protocol you end up on, is entirely dependent on you. And I happen to know that you have it in you to beat this thing.
All the best,