When you factor in variables like multiple pathogens, genetic traits that can hinder treatment, and environmental factors in a person’s living space, people stricken with chronic Lyme disease are getting the picture that this is a custom disease. Because of this, a treatment or detox approach that might work well for one individual might cause a dangerous reaction in others. In other words, no one approach is a silver bullet or panacea. There is no one-size-fits-all solution. Why is this and what makes things so complicated with this disease?
The vector: When diagnosing Lyme disease most doctors and patients look for a tick bite and resulting bull’s eye rash as the smoking gun. However, both of these factors are not always found in patients presenting Lyme symptoms, and even if they are, there are doctors in parts of the U.S. (especially outside of the Mid-Atlantic east coast region) who will not give a Lyme diagnosis because they believe “Lyme disease doesn’t exist here.” That said, patients should be aware that ANY kind of biting insect carries the potential to spread Lyme disease. These insects include but are not limited to lice, fleas, spiders, horse flies, black flies, mosquitoes, and bed bugs. Further, Lyme disease can be passed from the mother to her child through the placenta during pregnancy and some studies are showing the possibility of it being passed through sexual contact. Another potential factor is pathogens being passed through a tainted blood transfusion. Whatever the case, patients should be aware of all these possibilities if they begin feeling any of the symptoms of Lyme disease. The point is, there is more than one way to contract this disease, so be aware of all the vectors.
Pathogen load: Because of the above variables, once a patient has been infected, the infection itself can be different from patient to patient. Throughout the course of its lifetime, a parasite like a tick or bed bug may ride on many hosts and collect whatever pathogens are in the blood of that host. Because of this, parasites spread different collections of pathogens to different hosts, depending on the pathogen load in that parasite’s body at the time. This means the very nature of a patient’s infection will be different from patient to patient. And there are almost always multiple pathogens. Lyme disease was named for a single bacteria spirochete called borrelia burgdorferi in 1975, but the term is now being loosely used to refer to that bacteria and all of the co-infections that ride along with it.
Treatments: In the past we’ve posted several articles on treatment or detox information that have been met with an array of reactions. They have ranged from “this treatment saved my life!” to “this treatment made me sicker and harmed me! Take this post down!” These reactions have been the main impetus for writing this post. In general, the information we present usually comes from our own experiences, so we try to post only information about protocols, herbs or supplements we’ve tried ourselves. But that said, just because it works for us doesn’t mean it will work for you in the same way. Also, there is a slight chance it could be harmful… like with any medication out there… whether it be natural or synthetic. Does that mean you shouldn’t try anything? No, but it means you should take the BBQer’s advice of going “low and slow.” In other words, whatever new treatment or detox measure you or your doctor comes across, it is always a good idea to start with very low dosages and frequencies until you establish that you have no adverse reactions to it.
Panacea or Poison: Can Something Be Both? We all need to understand that something that might be a miracle cure for one person, might be a deadly poison to another. Probably the most dramatic example of this is with Bee Venom Therapy (BVT). We have heard reports of people improving from Lyme symptoms using this method where patients sustain multiple bee stings to gain relief. We have also heard of patients not experiencing any improvement. But the most important thing to understand is some people have a severe allergic reaction (anaphylaxis) to bee stings that is potentially life-threatening and requires emergency treatment. Does this mean no one should ever try BVT? No, it means everyone should be careful and to understand that your own health is in your own hands. If you’re interested in something like BVT, make sure you do not have an allergic predisposition to it before you even attempt it. And if you do try it and it doesn’t work for you, it is not helpful to argue with people in social media who have experienced relief from it. The point is, you’re both right… and that may be a complex concept for some people to accept.
The best information we can give you about treatments is for you to do your own research and to learn to become your own health advocate. Yes, it’s great to have a Lyme-friendly MD or Lyme literate doctor in your corner but the treatment they prescribe for you that might’ve worked for other patients might not work for you because of your own genetic, environmental or allergic peculiarities. This can lead to a circle of confusion as to whether you actually do have Lyme disease if initial treatment doesn’t work. It can also lead to endless rounds of expensive testing and symptom chasing of other illnesses that Lyme can mimic or cause to flare (i.e. 300 other illnesses including MS, EBV, ALS, CFS, etc.). Patients who tend to get better, focus on treating the most common vector-borne pathogens of Borrelia, Babesia, Bartonella, and Ehrlichia as a first line of defense and then notice that ancillary symptoms that mimic other illnesses can subside or disappear over time. However, your doctor’s advice and your own research will bear out what particular infections bother you the most and what the best treatments are for them.
You: Your genetics, current physical condition (i.e. status of your immune system), emotional state, living conditions and allergic reactions can all dictate how you react to an infection as well as the treatment and detox measures.
For example, people with the MTFR (methylenetetrahydrofolate reductase) mutation or histamine intolerance issues tend to have difficulty moving toxins through their bodies so they also have difficulty taking standard Lyme treatment protocols as prescribed by the makers of those protocols (i.e. Beyond Balance, Buhner, Cowden and Zhang).
Also, people who live in a toxic environment — whether it be a house compromised by mold or a home full of toxic relatives — seem to have a difficult time improving from protocols or detox methods until they remove themselves from these environments.
Stress and Your Emotional State: Patients who don’t have roadblocks like MTFR or histamine issues can still have Lyme disease difficulty or symptom flares if they are undergoing stress or have experienced an emotional trauma at any point in their lifetime. Ongoing emotional stress can cause a patient to experience symptom flares and treatment plateauing, which can add to even further stress. Trauma can cause long-lasting emotional scars that tend to trap energy in a person and compromise their immune system. We call it emotional baggage, but the end result is an energetic response that causes stress hormones and fight-or-flight chemicals to course through the body in bursts that can cause treatment to stop working. We have written two blog posts addressing these issues in particular with “The Mind/Body/Spirit Connection and Lyme Disease” and “Forgiveness: The Key to Healing.” The first step to getting better is to identify that stress or trauma might be an issue for you, especially if you are stuck in your treatment protocol.
Are there any constants?
So, you can see why Lyme disease and its co-infections are a custom situation by nature. But is there ANYTHING that is a constant in this situation? Here are few bits of information that can help…
- Do your own research (with or without your doctor): No one knows your body better than you, so you should consider yourself the world’s authority on it. It’s great to get advice from medical professionals but they don’t always know what’s best for your personal situation. It pays to be your own health advocate. If they insist on a particular treatment and you have an adverse reaction, yet they still insist… it’s all right to question or even fire your doctor.
- When trying new treatments, go low and slow: Don’t dive head first into a new treatment you’ve read about or have even been prescribed by a doctor. To ensure that you are not allergic or won’t have a strong adverse reaction, start with very small doses at a reduced frequency to make sure you can tolerate it.
- Drink more water: Most people, not just Lyme patients, are dehydrated. To enhance whatever treatment or detox program you’re on, it is recommended you drink at least 3 liters of water (about 3 quarts) per day. This extra water helps flush your detox organs and keeps toxins from lodging in your fat cells or tissue.
- Get a good night’s sleep: Most people need from 7-8 hours per night to feel recharged and rested. Those who don’t get a restful sleep tend to have serious issues with Lyme treatment because the ensuing fatigue can compromise a person’s immune response.
- Watch what you eat: By removing gluten, dairy, sugar, soy, corn and alcohol from their diet, many Lyme patients notice symptom improvements simply from making this change. Here is further dietary information for Lyme patients.
The above material is provided for informational purposes only. The material is not nor should be considered a substitute for medical advice, diagnosis, or treatment.