When treating chronic lyme, there are many possibilities to consider while evaluating what might be keeping someone ill. Below we have collected a series of resources and insights from our doctors that cover how we approach not only the treatment of lyme, but also tracking the results of those treatments to measure improvements or reactions.
Diagnosis and treatment for tick borne illness has come a long way over the years. Today there are more testing and treatment options available to patients.
In July, Dr. Eric Gordon sat down with Dr. Jamie Kunkle to discuss the many new developments they are seeing and how it applies to their patients. This clip covers how Dr. Kunkle tracks treatment progress with his patients.
Interview and Q&A from the conference “Putting Lyme Behind You”
In 2011, Gordon Medical sponsored a conference with Dr. Joseph Burrascano, MD, which included a panel Q&A with GMA practitioners after the talk. Even though the event is from some years ago, and knowledge about Lyme Disease has changed during that time, you may still find some of these answers from Dr. Gordon helpful. We’ve edited a few sections that are especially relevant to tracking your healing from Chronic Lyme. Always be sure to check with your doctor before making any changes to your treatment.
It’s so important for the patient to keep really clear records, the calendar of when their treatments start, and responses to them, that simple thing I find very useful in deciding how treatment is going.
It is a pattern of response that we look for. We ask people to keep a calendar and write down a plus for a good day, a minus for a bad day, and a zero for a regular day; also a zero goes for any day you really have to think about it. If you’re not sure if it’s a good day, then put a zero.
I encourage them to keep it simple to start with because if it’s simple, they will actually do it. The symptoms tend to run together if they don’t somehow keep track of how they are doing, especially in response to treatments. If the active infection is giving most of the symptoms, that’s another hint that we ought to be looking elsewhere for the cause other than just Lyme, look for a lot more bugs if the symptoms really diverge a lot.
We’re looking for patterns.
The response to treatment often isn’t a linear response. When you have acute Lyme or Lyme for less than a year, then people will often get better in that more linear fashion. You’ll give them the antibiotic and they just get better.
In chronic Lyme we don’t have that. We don’t have clear standards on how to treat someone to best be sure they will get well. So what we’re left with is unending anecdotal medicine, and that is the great weakness of what we do. The only way it’s going to change is if we actually empower patients to keep better records of what they’re doing and what are their outcomes.
Something to remember when you see different providers is that their therapy still has to fit your situation. It doesn’t matter what doctor you go to. If their story is that this is an infectious disease that can be treated predominantly by use of antibiotics, it will fail if what you have is a genetic tendency to hypercoagulability and mold sensitivity and have had a mold exposure. If you go to a doctor who thinks that things are predominantly mold exposures and your problem is predominantly a chronic Babesia infection which happens to have symptoms that are almost identical to the neurotoxic response to mold.
You just have to be willing to not feel bad because you don’t respond to their therapy. Their therapies are very, very good and effective, but they often have to be done at either the right time or more importantly in the right patient.
It’s not about the doctor or the patient being wrong.
Sometimes it’s just a matter of you have to find a doctor that you can actually communicate well enough with and feel like what they’re doing is good enough, whether or not it’s the absolutely optimum thing, but if you can work with them you’re going to do a lot better.
Right. That’s the whole point of the clinic is that hopefully we’re putting together enough doctors who are good at different things but they can see the whole picture.
Dr. Gordon’s answers from the Q&A:
Looking at possibilities behind the symptoms is important. You have to encourage patients to remember that 20 years ago almost everybody was only treating Lyme, and then 15 years ago they realized, oh, maybe we should be treating more of these coinfections. And then they came up with, well we should treat the coinfections first.
If you have tested positive for Lyme disease and multiple coinfections, and have had no response to antibiotic therapy, there are several possibilities. The first is that the key infection may not have been treated aggressively enough, or perhaps right on the border. Sometimes we find that the order in which the infections are treated will affect the outcome of treatment. Other possibilities include a viral infection, or mold or other toxins that are affecting your immune response—or in fact creating your symptoms.
Many times we see antibodies to multiple tick-borne infections; also to multiple viruses; as well as to mycoplasma and chlamydia and pneumonia. When we see this pattern, the question is: Which is the important infection?—or are we just dealing with an up-regulated immune response caused by multiple infections that the body has seen, and perhaps even dealt with?
Toxicity is often a problem for people who do not respond to antibiotics, but in these people we usually see significant side effects from treatment protocols.
We must consider mercury or other environmental toxins, celiac disease, and especially, difficulties with the methylation pathway and kryptopyrrole (KPU), as having an untoward effect on the body’s ability to deal with infection and with cytokine production.
If you are in treatment, but have found that your body cannot tolerate ongoing standard doses of antibiotics, we need to address how capable you are of mobilizing your immune system.
Can it use antibiotics to kill the infecting organisms (Lyme, Bartonella, Babesia, Ehrlichia, Mycoplasma, etc.), and then how capable it is to remove those dead organisms and toxins from the body. This requires the coordinated workings of the organs of detoxification: the liver, intestines, lymphatic system, kidneys, skin, lungs, and spleen, along with the immune system, to do this properly.
By its very nature, Lyme disease weakens the immune system, often profoundly, and compromises the ability of these organs to do their jobs properly. The longer the individual has been wrestling with Lyme disease, the weaker these systems get. Part of our job, as Lyme-literate specialists, is to attempt to evaluate all of these components, to create a treatment plan. While we have some tests that can help us in doing so, most of these tests are somewhat limited, and we often have to observe how our patients respond to our treatments to get a better picture.
When we treat Lyme, we often start with an antibiotic and herbal/detoxification approach, but some of our most compromised patients cannot tolerate this at first. This means that before we start antibiotics (either medications or herbal) we may have to first build up our patients’ bodies. Patients who have been ill for a long time usually have weakened adrenal, thyroid, and sex hormone systems, as well as depleted neurotransmitters. Many have heavy metal toxicity and/or mold toxicity, or multiple chemical sensitivities, or allergies, or difficulty with methylation chemistry as well. We may have to start with those systems and build them up before even thinking about detoxification or using antibiotics. Liver function is only one aspect that we must consider. Often we find that gentler approaches, such as homeopathic remedies, can help us get started.
Each patient is different. Each requires that we delve into their unique chemistry to try to find an approach that they can tolerate before we proceed with antibiotics.
You have reached the end of the Q&A
“We originally thought of Lyme disease as primarily an infection caused by the spirochete Borrelia burgdorferi. In the decades that followed, researchers began identifying other tick-borne bacteria and toxins that frequently accompany Lyme infections. We have come to realize that the symptoms which we once described as “Lyme disease” frequently involve other bacteria, such as Babesia, Bartonella, Ehrlichia, or Mycoplasma, or rarer species such as the Rickettsia group or tularemia. Transmitted in the digestive tract of ticks or fleas, these pathogens may be carried by cats, rats, mice, deer, and other animals, depending on the microbe. These pathogenic bacteria are among the smallest known life-forms on earth. Unlike most bacteria, they are harbored within the cell as a virus would be or within the interstices between the cells, making it difficult for the immune system to dislodge them. Fungal toxins, heavy metals and chemical toxins may also be part of the picture. All of these being neurotoxic in nature. There are common mechanisms of action with all of these which can result in inflammation, build up in the cell and disrupt self-regulatory mechanisms.”
Wayne Anderson, ND