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 Funding
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
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 to me 3 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.
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
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
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.
At some point either during treatment or shortly after, we all ask the
question, "Will I ever be able to enjoy the outdoors again?" Many people
whose lives are affected by Lyme disease develop a fear of the outdoors. We
don't want to go hiking, camping, or even go for walks in the park anymore. We
rarely even sit outside in fear of being re-infected.
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!
Back to Top