What happens after Treatment?
Many of us learn about this disease after being diagnosed with it, and we research all of the different treatments and options, we learn what to expect from the Herxheimer Reaction, and other associated issues that go along with treatment. Rarely do I see people discussing what happens after treatment, and it is a discussion I think is worth having.
There are a lot of different aspects to “After Treatment” care. For example, why was treatment stopped? Was it because your doctor or LLMD felt you were “cured” or in “remission?” Or was it due to financial reasons. If treatment was stopped prematurely, you need to find an LLMD that will continue treatment as long as necessary. Please see the LLMD and Financial Assistance pages for more information.
Treatment can sometimes be stopped because it is no longer improving symptoms, or it is making symptoms worse. There are many underlying issues that could be going on, so before you decide to continue treatment by self-treating, or seek out another LLMD that will continue treatment, consider other possibilities. This was the case with me, and it turned out to be Candida that had become my enemy, it was no longer Lyme.
A dear friend of mine who has two children sick with Lyme, found out after Treatment with one of her girls that she actually has a gene mutation (MTHFR) that causes very similar symptoms to Lyme, including fatigue and brain fog. This is why she wasn’t getting better. She did have Lyme, but she also has this.
Assuming that your treatment was stopped because it was no longer needed….what happens next? Do you just go back to life as it was before Lyme? While this rarely happens emotionally just because of the experience, many of us go back to our same habits and lifestyles. Sure, we may use tick repellent when we go outdoors and be more vigilant about checking for ticks, but we often miss the most important messages we learn from enduring the disease to begin with. I’d like to address those issues here.
Personally, I don’t like the term Remission. Webster describes it as “a temporary and incomplete subsidence of the force or violence of a disease or of pain, as distinguished from intermission, in which the disease completely leaves the patient for a time; the act of remitting, surrendering, resigning, or giving up.”
Other chronic diseases that use the term remission, like Cancer, do so because the underlying cause is “unknown” and is often related to nutrition and overall health and well-being. If lifestyle changes aren’t made, the chronic illness is likely to return. Perhaps Wikipedia says it best, “the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity.”
What does all of that say to me? It says that I have not made lifestyle changes, and I am leaving the option on the table for Lyme disease to return. I’m giving it permission to once again inhabit my body at a later date. It’s a spirochete, a bacterium. It’s either alive and inhabiting your body, or it’s not there at all. There is no maybe. “Symptom free” doesn’t quite cut it either, because you can have symptoms, and not have Lyme. If you’re symptom free, that’s great! That means you’re healthy!
I prefer saying I am “Lyme free” meaning it does not have a home in my body. If I say I am in remission, then I am admitting to myself and my body that I don’t believe my treatment was successful and it’s only a matter of time for it to return. Besides the obvious bad reasoning with this, it also allows us to jump back into treatment at the first sign of “relapse.”
Relapse is a touchy subject. Many of us almost expect it, as if we are waiting for it to happen. This is mainly because we learn to be “cautiously optimistic,” as a friend of mine says, because of all of the ups and downs of treatment. And then there is always the possibility of re-infection, and how do you tell the difference if you don’t find a tick or develop a rash? Don’t be too quick to jump on the relapse train. Rule out ALL other possibilities first.
The problem I have run into, and I think is probably the case for many of us, at the very first sign of symptoms, I immediately jump into the mindset that I am having a Lyme relapse. This has happened several times since I completed treatment. My doctor, the angel that she is, keeps telling me, “No, we are done with Lyme.” With further testing and scrutiny, this is what I found.
The first time, it was 100% Candida related. Every last one of my symptoms was due to Candida overgrowth and an imbalance in my body. Testing showed that I had Candida overgrowth, and there was no sign of Lyme. Going on the diet eliminated all of the symptoms.
The second time, it was 100% diet and stress related. This time, Candida was no longer a factor, balance was being restored, but my going on and off the diet wagon, not sleeping enough, and being stressed out is what sent me back into symptoms. Again, no sign of Lyme or ANY inflammation in my body, at least as tests showed. Back on the diet, and my health improved. Never quite got 100% on the diet, so did not get back to 100%, but close!
Third time, and this time I was really convinced….it had to be Lyme. More testing. Checked hormone levels, Vitamin levels, etc…..Guess what….diet and supplementation to restore balance……I wasn’t eating right. I got caught up in life, in trying to finish this website, and didn’t “have the time” to eat right. I was lazy. And since Candida was no longer an issue, I went WAY off the wagon! And guess what, I got sick again.
I continue to struggle with finding a permanent balance and although I am Lyme free…I am still walking the path of discovery and figuring out how to stay committed to my overall health and stop the roller coaster ride.
Here’s the thing. There is always going to be “something” that requires your attention. There is always going to be “something” that stresses you out. There are always going to be trials and tribulations, projects, and distractions. I have learned that I need to find a way to eat right, exercise, meditate, and find ways to relax, express my creative self, and enjoy every moment of every day. Just like I make time to brush my teeth or shower…..I have to MAKE TIME to take care of myself FIRST. It isn’t good enough to take care of myself in between everything else that is going on. This is my big lesson.
Now, I’m focused on eating right, exercising, and staying healthy (see My Story). It is my goal to help you do the same.
I finally realized the most important lesson this disease has to teach.
Taking Care of Ourselves
Anyone who has actually had successful treatment with this disease will probably agree that the most important thing we learn during this process is how to take care of ourselves. We don’t really have a choice, do we? We either learn to do this, and to listen to our bodies, or we perish. It’s’ really that simple.
Of course, many people have the same experience as me, and learn this the hard way. We start off thinking, oh, I just take antibiotics and it will all be fine. We don’t realize until it is too late that Candida plays such a huge role in the success of our treatment (see the Candida & Lyme page). That brings the realization that nutrition and overall health play a critical role in our success (see the Mind & Body and Nutrition pages).
And finally, we finish treatment, and want our old lives back so badly, that we have a momentary lapse and forget all that we learned about taking care of ourselves. We also forget that it takes time for the body to return to balance. It takes time after treatment to completely heal.
I don’t think any of us ever really “get our lives back.” And honestly, I wouldn’t want my old life back. Not if it meant giving up all the personal growth that came with this. In many ways we do return to our old life if there is no permanent damage. But this disease changes you. Just like any traumatic experience, you can never go back to the way you were. Part of healing is letting go of the past and being okay with where and who you are. I have never met anyone with Lyme disease that was not humbled by the experience and at the same time made into a strong, compassionate, and helpful person (see the Success Stories pages).
If you take nothing else from this website, please hear this:
Treatment success is directly related to how well you learn to take care of yourself….physically, emotionally, mentally, spiritually, and otherwise.
Here’s what I have to say about that. Hopefully, you have become well-educated on the disease and know what to look for. Hopefully, you have learned about prevention and what steps to take to limit your exposure. Hopefully you have learned how to take care of yourself, which plays a huge role in prevention.There is no reason to give up the joys of life and the things you love out of fear.Be diligent. Use prevention every time…..before and after possible exposure. Make sure you are eating well, and taking care of your whole person so there are no other underlying causes of symptoms. If you do these things, it will make it easier to spot a tick if there is one and prevent the first bite. In the event you don’t see a tick and become re-infected, you will be better able to recognize symptoms and seek out appropriate treatment.THIS is one of the main reasons (besides the obvious benefits) of keeping yourself healthy. If you continue to eat a highly processed, sugar-filled diet, your chances of developing symptoms from nutritional deficiencies and digestive imbalance (like Candida) are more likely than becoming re-infected with Lyme disease. If you do not get enough sleep or exercise, you can develop symptoms, and it can lead to nutritional deficiencies. If you lead a high stress life or are unhappy, this can lead to imbalance and symptoms. Take care of yourself!
The chances of you becoming sick with other diseases like Cancer, Diabetes, Heart Disease, and auto-immune disorders are MUCH MORE LIKELY to occur than re-infection if you do not learn how to take proper care of yourself.
So, don’t worry about going outside. Go hiking! Go have a picnic! Go for a walk in the park! Just use prevention, and be diligent about it.And don’t forget to ENJOY LIFE!
Enjoy Life! It’s Yours!