I’m In Remission! Now What? 

Hold your horses.

Take it slow. Don’t forget about how sick you were. You just started to feel good. Hold off on the tequila shots and first consider your exit strategy.

Not Knowing Where To Stop

Everyone has different treatment plans, and different levels of luck I might add. The amount of time it takes to reach remission can take anywhere from a month to years to a lifetime. And you’d be shocked at how quickly some people get better on the cheaper more simple protocols and how others attack their infections with every resource they’ve got to see zero improvements.

Knowing When To Stop Treatment

With some luck and dedication, lots of people with Chronic Lyme can reach a point where they feel well enough to work, to have mobility and, most excitingly of all, to finally think straight after long a long brain drought. If you can reach a point where you start asking yourself “did I just wake up from a bad dream?” then you’ve accomplished a magnificent pursuit. Let’s just take a moment to acknowledge how far you’ve come.

Reaching this point, you might ask yourself if you should – and how you should – stop treatment.

Many of us are not just taking antibiotics; we are on an array of medications for energy, vitamin deficiencies and more. I do not think it is wise to go cold turkey on all your medications at once, and I’ve see this backfire on people too many times. An important thing to remember when you are feeling great is that no, you did not wake up from a bad dream but are feeling better because of hard work. Try not to dissociate from the trauma of however many months or years you were chronically ill. Don’t forget how much work it took you to get there no matter how long you’ve been feeling “normal.”

To be honest, I sometimes forget how hard I worked at my health. A few years ago, I was in the worst pain of my life, all over, all day, every day. As much as I don’t miss the pain, I miss the discipline and level of spirituality I had reached. I was in pain, but I was mentally tough as nails because I had to be in order to maintain my sanity. I would meditate on pain, and looking back, I think that was pretty badass of me. Now, I may have some tired days, maybe even tired weeks, maybe the emergence of old symptoms, but never what I had experienced then. Now, also, I am more of a sissy with pain, and reach for painkillers before trying first to meditate on my pain. Why? Because I can justify taking an Advil once a month, but I couldn’t justify living off Advil to remedy months of constant pain.

I share that story because I have, at times, relapsed simply because I forgot that I had a chronic condition. The bad dream seemed over, and every time I pushed myself and Lyme did not push back, I started to feel invincible. If you do feel like you are ready to get off your antibiotics, antimicrobials or other treatments that you use to kill an infection, take a moment to pause. Ask yourself: How long have I felt better? Have I pushed myself and been pleasantly surprised that my Lyme symptoms have remained in control?

I cannot be sure that this recommendation will apply to everyone, but I think that halting medications should be a process. I think that if you are feeling great, it might be advisable to keep taking what you are taking for a few days, weeks, or even months longer. You may want to talk to a trusted Lyme literate doctor about your specific exit strategy and duration.

What To Cut First

I cannot be sure that my next recommendation will apply to everyone, but I think that cutting out infection-killing treatments before other treatments might be advisable and here’s why: Chronic Lyme Disease unfortunately returns for many, if not most, patients at least once after being in remission. This may indicate that somewhere in some crevice of the body, the infection was not fully eradicated and thus multiplied once treatments were halted. I do not think being on antibiotics for life is preferable to taking the chance to be antibiotic-free and possibly experience a relapse. What is preferable is that your immune system be healthy enough to take care of (whether by eradicating or inactivating) whatever possible critters remain.

So, for example, if you are taking antibiotics that kill infections, if you are taking thyroid medication to boost your hypothyroid, and if you are on any immune-modulating medications that you are confident are helping, and you feel as if you have reached remission, I think the antibiotics should be the first to go. The other medications can help you continue to work on balancing important systems in your body: adrenals, immunity, metabolism, etc. Leave plenty of space – more than just a couple of days – in between medication-elimination trials. Eliminate one med at a time, and consider staying on some medications indefinitely.

I have tried getting off DHEA (a synthetic hormone similar to testosterone that my body doesn’t produce well) a handful of times: I only try to when I feel like an energizer bunny, and yet, I so far have always ended up back on DHEA after a few days of instant exhaustion. I could try to stay off it longer, but I have personally decided that I don’t want to risk throwing my body off balance and saying goodbye to all that balancing energy. If I didn’t have an underlying infection (I am in remission and can maybe even be “cured,” but I refuse to assume that after relapsing a few times) then I would try to stay off DHEA for longer and see if I’d level out, but acknowledging that my hormonal balance ties into my immunity, I don’t take that chance. So as much as I feel invincible in my remission phase, I have chosen to stay on some meds indefinitely, after years of experience with relapsing humility.

Fear is a common emotion when it comes time to stopping treatment. There is always that chance that the infection will come back: that the only reason you feel well is because you are taking a cocktail of pills that create an illusion of wellness. It’s like the difference between running away from an axe-murderer who you shot in the leg and hit with a frying pan, opposed to grabbing his axe from him and chopping him up until he’s dead, dead, dead. He may still be out there when you run away and return to your ordinary life. The police may tell you that they are doing everything in their power to find him. And you can either live in fear or you can go on with life – and maybe take up taekwondo just in case. The fact is, relapses do happen and they do suck. They suck as much as getting Lyme in the first place, because you put so much damn work into finding your way to remission only to do it all over again.

The bright news is, you are more equipped to deal with a relapse than you were back when you first started treating Lyme. You may get paranoid about starting antibiotics again because you’re wondering about antibiotic resistance. You may get back to researching ways of treating it, and learn something new. The most important thing is that you notice that you are relapsing before it becomes obnoxiously obvious. Notice it when your symptoms are mild and manageable, and don’t wait until it gets as bad as it was at your worst. Work on your immunity, notice if you are starting to relapse, and readily have a plan of attack if a relapse is to occur. It’s not the end of the world, and a lot of us have been around the relapse-block before. You are in good company! Another rite of passage?

Knowing When To Change Protocols

In less fortunate circumstances, we are not asking ourselves “am I too healthy to be treating Lyme?” but instead, “am I getting worse on this protocol?!”

Lyme Disease treatments range from changing your diet, to doing life threatening treatments like hyperthermia, IV chelation, and long term antibiotic usage. You’d think that the stronger treatments would knock out an infection, but sometimes they knock us out more. It’s like with cancer: sometimes it’s not the cancer that kills you but the chemo. You have to be strong enough to handle the most invasive of treatments.

I find that a lot of people are just so terrified of Lyme Disease that they jump right to the big guns (antibiotics, protocol with tons and tons of drugs, etc). They’d rather have a machine gun, then any real hands on combat skills. But in taking this path, a lot of people also skip the curve of learning about how every little thing – from your diet to your sleep habits – counts in getting better. It’s unfortunate when the only thing people are doing to get better is take antibiotics, because initially they feel better almost instantly: then they either become scared of getting off these drugs, which eventually start working against their immunity and their guts; or they get off antibiotics, find that their symptoms return and immediately get back on antibiotic island where it was safe the first time around.

When it comes to treatments, even ones that worked once before, sometimes they just don’t work anymore. Having Lyme Disease almost forces us to be open to new treatments. It helps if you are always hungry for information that you can use to your advantage, and if you can keep asking questions about what your treatments are doing for you, and what other protocols you can try.

That said, some people are open, and have tried Western medicine, Eastern medicine, German medicine, meditation, dieting, and more, and keep on looking for the next thing. Some of these people have tried getting off antibiotics and it’s so unbearable that they get back on them just for some normalcy. Like my DHEA habit, antibiotics (and other Lyme treatments) became a crux that people can no longer walk without (sometimes literally). In the end, I am just a writer, your doctor is just a doctor, and this is your life. In the end, becoming your own advocate, de-stressing, being grateful, and being open minded, educated and experimental with your health, sometimes don’t all add up to remission. And sometimes it’s just nice to be alive and have good days, even if we do have drug cruxes. Either way, life is short and it’s yours.