What to Expect When Starting Lyme Treatment

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By the Lymeology Team

Congratulations! You’ve just been diagnosed with Lyme disease. You have an answer,  and it’s official, you are not crazy. There is something legitimately wrong. If you were able to get a Lyme diagnosis right away, you’re very lucky. More than likely, you’ve had to visit multiple doctors, over several years with increasing symptoms. But at least now you have a name to put to all the crazy symptoms you’ve been experiencing.

Now that you do know what’s going on, you’re probably feeling a whole host of emotions. You may be feeling relief that you’ve finally found a doctor who believes you, or maybe you found the answer on your own. You may also be feeling confusion, uncertainty, scared or even anger that it took so long to diagnose or that you have Lyme at all. Any and all of your emotions are completely valid. Whether you’ve found your Lyme literate doctor or you’ve discovered this through your own research there’s a new question to ask. What now? The next step is treatment.

Your doctor has probably gone over some treatment options and got you started, but you’ll still have a LOT of questions. No matter what treatment plan you decide to try, antibiotics, natural supplements, or any combination thereof, here are some tips to help you while on this long and winding road to remission.

  1. Depending on how long you’ve been infected—it’s going to be a long road. (It’s not uncommon for it to take years.) So pace yourself. Just like with any goal in life, expect bumps in the road and sharp curves, but try not to let that deter you. The priority is for you to be able to take care of yourself and let your body and spirit heal. People say this quite often about Lyme treatment; “It’s a marathon, not a sprint.”
  2. It’s not just Lyme. More than likely you have co-infections, too. Those are accompanying infections that were also transmitted when you were bitten. Co-infections can be just as hard, if not harder to treat than the Lyme itself. They can also complicate your treatment. So it’s just as important to focus on those too. A few common co-infections are Babesia,  Bartonella and Mycoplasma. Here’s a link to https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/. It’s a great resource and will help you learn more about the different co-infections. The co-infections will require their own rounds of treatment.
  3. I’ll just say this bluntly. Treatment sucks. It will get worse before it gets better. I didn’t understand this at first. I really just didn’t get it—and then I did. Once treatment starts, you’re probably going to experience what is called a herxheimer reaction. What that means is when the Lyme bacteria die off, they release an endotoxin. Those toxins build up in your system and your symptoms will increase (Ugh, I know, right?) and/or new symptoms can arise (insert eye roll here.) Sometimes they’re minor, sometimes they’re not. Now, not every Lyme patient experiences these, however, most do. If/when you do, that is a sign that your treatment is working. So while “herxing" can be miserable, celebrate this little victory because it’s also a good thing. It’s your body’s way of letting you know that you’re kicking spirochete ass! *Please know that if you are one of the lucky few who do not herx, that does not necessarily mean your treatment is not working.
  4. Detoxing. At some point in your treatment your doctor, if they’re worth their salt, will tell you to start detoxing, preferably sooner rather than later. This is one of the most important, if not the most important facet of treatment. Without detoxing properly, you will not get better. It’s that simple. Oh, and remember that herxheimer reaction? Well, there’s really only one way to ease it. That’s through detoxing. All that dead stuff has to get out somehow. There are a ton of ways to detox and really it’ll be trial and error until you find what works best for you. Here’re some ideas to get you started: epsom salt and baking soda baths, infrared saunas, Alkaseltzer Gold, activated charcoal, coffee enemas, lemon/parsley water. I was almost a year into treatment before I finally found what really worked for me, so give it some time, and be open minded, you may be surprised. If you don’t detox, you’re going to feel worse and it can hinder your progress.
  5. There are many avenues of treatment. Every person is different, everyone’s symptoms are different and everyone responds differently to their chosen treatments. That’s one of the reasons there is no set guideline for treatment. What works for one doesn’t always work for another. Therefore, treatment too will be trial and error. You’ll have to do research, talk to your doctor and other Lymies (fellow Lyme fighters,) and in the end do what works for you and makes you the most comfortable. Some patients start out right away with oral or IV antibiotics. Others refuse any type of pharmaceuticals and opt for wholly natural, like the Cowden or Bruhner protocols. Whatever you decide, just remember there is no wrong decision. You have to do what’s best for you and you are the only one who knows what that is.
  6. This disease can make you feel very isolated, even when you’re surrounded by close family and friends. You are going to learn so much about yourself during treatment and about your significant other, family, and friends. Some of whom you may lose along the way because even though they think they understand, they just don’t and won’t unless they experience it for themselves. So surround yourself with as many different levels of support as possible. Then, join a Lyme support group. There are many groups, a lot of them on Facebook, and they’re a great place to surround yourself with people who get it. You can even find a support group that is local to your area. *There is one caveat to the online support group. They can be a great go to resource with everyone at different stages and different experiences, but from time to time, they can become overwhelming and you may need to distance yourself. That is perfectly acceptable and we all do it. Just click the unfollow button for a few days or weeks so it’s not always in your face. Then when you’re ready to go back, it’s as simple as changing your settings. They’ll understand and they’ll still be there. The Lyme community, in general, is very supportive.
  7. Last, but not least, don’t give up. To borrow a phrase from the really cute animated movie, Meet the Robinsons, “keep moving forward.” There are going to be difficult days/weeks/months. Find ways to help you cope. I love hot yoga, burying myself in my bed to watch movies on my iPad, snuggling with my fur-babies, oh and crying on the phone to my mom. Find whatever works for you. Just know that you are not alone in this and remember that this is going to take time, but in the end, when remission has been reached, it will all have been worth it.