When I sat down to write this blog, many thoughts came to mind on what I want people to know about treating chronic Lyme disease and more specifically treating chronic Lyme disease with disulfiram. I debated discussing the dose, symptoms, recommended supplements, etc. however, I feel that the publications of Dr. Daniel Kinderlehrer and Dr. Liegner have done a fantastic job of keeping the public updated on clinical findings and methods of treating Lyme disease with disulfiram. Instead, I would like to touch on what I have been seeing with patients in regard to expectations of treating Lyme disease and more specifically expectations of treating Lyme disease with disulfiram.
Disulfiram as the “Silver Bullet”
Recently I have seen a shift in expectations where the Lyme patient is seeing disulfiram as the new “silver bullet” and the belief that all of their symptoms will disappear after a few weeks/months of disulfiram treatment. I think this shift is due to the new-found hope that providers and patients have with the discovery of disulfiram as a treatment (myself included). My hope today is to re-iterate that disulfiram is not the “end all” of Lyme disease symptoms, but instead another treatment option. Disulfiram is proving helpful in treating Lyme disease and in many, greatly lowering the bacterial load or possibly eradicating it; however even with a lower bacterial load, most patients will still suffer from symptoms due to issues including: limbic dysfunction, mast cell activation, mold exposure, EMF exposure, bartonella, and a host of other co-infections and/or conditions. Is disulfiram helping chronic Lyme disease? Absolutely! Disulfiram is an excellent tool in the toolbox, however I want to stress to people with Lyme disease that similar to using antibiotics, herbs, and other modalities, disulfiram is just one step in the process to good health and not the “end all” – other modalities and treatments will still most likely be needed for you to find true healing.
In addition, what I am seeing is that patients are looking to social media on how to take disulfiram, side effects, etc. Many of these people are seeking out the medication through online purchases or finding a provider that will prescribe the medication, but not following the providers instructions and/or not returning for follow-up and/or lab review. I am seeing the thought process of “all I need is this medication for a few weeks/months and I will be healed”. Again, I want to stress that it is extremely important while taking disulfiram to work closely with your provider with monthly follow-ups and monthly lab work and not to rely on advice found on social media instead of the advice from your provider.
A side effect that I am seeing with disulfiram treatment is that the medication increases neurological symptoms such as anxiety and the inability to concentrate and make logical/simple decisions. Often when people are in this frame of mind, poor decisions are made and the patient struggles with cognitive function. By putting your trust in your provider and having monthly follow-up visits to address side effects these neurological symptoms can be mitigated as much as possible. The monthly visits are also important for reassurance that what you are feeling/thinking is a side effect from the treatment and is temporary – I like to tell my patients not to make any important decisions while on the medication and during the wash out period post medication – don’t sell your house, don’t quit your job, don’t breakup with your significant other – wait until the herx and the medication have cleared so that you can make good decisions. And again, make sure that you are seeing your provider monthly and completing all lab work during these times – your provider will help to reassure you that your cognition will return and you will be able to make clear decisions in the future. While you are having a hard time making decisions it is easy to stop seeing your provider and not do the labs, but the visits and the lab work are the most important thing you can do!
Why are the labs so important? Disulfiram essentially turns off the liver enzyme that allows your body to process alcohol and can affect how your liver functions. By monitoring liver function and enzymes associated with the liver, the provider is able to keep your liver healthy during and after treatment. I also like to monitor plasma zinc and serum copper levels to ensure that the levels are balanced before treatment and remain balanced during treatment. Disulfiram has a tendency to increase copper levels and the literature indicates that increased copper levels are associated with symptoms of anxiety and poor mental health. If we keep a good balance of copper and zinc this helps to negate the neurological side effects of the medication and decrease mental health issues. A copper/zinc level before treatment, during treatment, and after treatment will allow the provider to monitor and track these levels. Taking 25 mg of zinc twice daily with disulfiram and for one to two months after treatment can assist in preventing elevated copper levels, as zinc and copper have an inverse relationship (if one goes up and the other goes down).
Lyme Treatment Continues to be a Journey
Again, I want to reiterate that although disulfiram is helping patients heal from chronic Lyme disease, we still need to follow what we already know about treating the disease, such as preparing the body for treatment by improving gut health, opening emunctories, treating and removing toxic mold exposure, quieting the limbic system and mast cells, working on the vagus nerve, etc. The involvement of many body systems is why it is so important to have trust in your provider and allow them to assist you in the Lyme journey before, during, and after disulfiram treatment. The Lyme journey continues to take years for many patients to fully heal with many improvements along the way, it is important to have trust in the process and be patient with your treatment progress.
Elizabeth Kirt is a Functional Medicine practitioner and is licensed in Michigan, Wisconsin, Colorado, Wyoming, Idaho, Oregon, New Mexico, and Arizona. She is currently accepting new patients via telehealth and onsite visits at the PrivaMD | Center for Functional Medicine in Grand Haven, MI. Contact the office at 616.213.0253 to schedule an appointment today.