Dr Steven Harris: It’s so important for us to expand the awareness of Lyme disease

In the latest, Australian Lyme: A Global View series, Dr Stevem Harris talks to Sharon Whiteman, CEO, LDAA about his approach to the diagnosis and treatment of chronic and complex illnesses, including Lyme disease and other tick borne co-infections, as well as myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia, autistic spectrum disorder, chronic inflammatory response syndrome, mould, mycotoxin and other environmental illnesses.

Dr Harris has concentrated on these conditions since 20o1 and in his unique approach he incorporates strategies found in conventional, functional and complimentary medicine. He believes there are many effective treatments available to those with chronic and persistent infections.

Dr Harris has also taken a leadership role lymesdisease.org, a research patient advocate group which has been largely responsible for spearheading favourable legislation in protecting patients, expanding Lyme disease awareness and fostering continued public health education. Dr Harris is also an active member of ILADS – the International Lyme and Associated Diseases Society. It’s a professional medical society of physicians and scientists, which has become the authority on effective and evidence-based treatment for chronic Lyme and associated diseases.

Watch the full interview below on video or continue to read the interview.

Here is the interview:

Dr Harris, tell us a bit about your background and why you became interested in the complex, chronic illnesses. I was critical care nurse for 20 years and I’ve worked with all kinds of doctors and I’ve found doctors that work with chronic illness are almost like investigative scientists. You have to be patient and really listen to the patients and it’s a really unique and very precious skill. So how did you get into that line of work?

Well, I spent quite a bit of time during residency in my medical training actually doing surgery and was very involved and interested in trauma surgery and wartime medical assistance. So, I expect that I was going to be, after working in the United States for a couple years, spending most of my time whether it was with Doctors without Borders or another organisation – or on my own internationally. I had really planned on doing jungle medicine as it were. And so, after training I started working with Dr Therese Yang in San Diego just to get my feet wet, and she was one of the clients actually of my father’s lab at the time. He started the lab, IGeneX, and so I knew quite a bit about Lyme disease and about the plight of patients and I was very interested in Lyme disease but didn’t expect that I would actually be practicing in it until I started working with Dr Yang and realised in East San Diego County, that it was essentially jungle medicine.

These patients were some of the sickest I’d ever seen. They had been un-diagnosed for years, they suffered neurological disorders, musculoskeletal disorders, the fatigue and pain unlike anything that I’d ever seen in my training. And when I saw that there was such an unmet need in this country I decided to really focus on Lyme disease since I’d already had such a sense of background. I had had had many nights talking over the dinner table with my father about the plight of Lyme disease patients, about diagnostic testing, about their inability to get diagnosed and then when they were diagnosed – they weren’t getting treated, they were ignored, they’re maligned – and it was very heartfelt hearing about these patients. And so, as I started to initiate my own medical career I saw that it was the natural thing to do.

So you came from a social justice and humans right drive from the very beginning?

Well, the fact was, these patients just they weren’t getting the care they needed and I knew there was answers for most of these patients. We didn’t have the extensive knowledge of complementary medicine that we’re developing now and there were very few treatments that were available – but many of the treatments really worked. And so, if there was a treatment that worked for most of these folks and they weren’t being delivered this care it just wasn’t natural that they shouldn’t be able to receive it.

Your father must have been a pioneer like yourself?

I think he’s definitely one of the pioneers – him along with Richard Horowitz and Joe Burrascano and John Drew and so many others – and Therese Yang. And so, the new generation of docs at the turn of the century, we’re just standing on their shoulders basically and we’re able to springboard from their courage and innovation to take up where they left off.

It sounds like there was no fear of innovation. Sometimes I look at what’s happening in Australia and there can be a fear of innovation and I don’t know what that is about. What drives you through those challenges of medical and health policy failures that you see?

Well, knowing that these folks can get better, knowing that the answer is there and knowing that if we can hold fast to what we know is true and right – and be open to learning new information when it comes in. It’s really being open and being steadfast at the same time.

One of the aspects of it is that it’s science based, isn’t it? You know, like really the denial is based on cherry picking or old, outdated science.

Well, that’s part of it. But there’s also probably some deeper and more sinister reasons why it’s being denied. I like to think that it’s being denied because some of the rule makers are either blind, stupid or they’re lying. And at the same time, yes, they can cherry pick very limited studies and at the end of the day we don’t know how the pathogenesis of this disease affects everybody because there’s such a broad scope of symptoms it does baffle the mind about how these patients can be so sick. And when there’s so many systems at play and you’re crossing so many disciplines that at least in the States – where we have such sub-specialised medicine where doctors don’t really talk to each other and we don’t have broad generalised treating physicians that can look at both evidence-based medicine. So the evidence is yet to be forthcoming and looking at possible and patient-oriented medicine, it’s quite a phenomenon.

I think it’s really an approach based on our medical system, it doesn’t really allow for integrative care of chronic complex patients whether it’s because of the sub-specialisation, whether it’s because the lack of information or the partial information or some people at the top withholding all the information that they know because it’s not all bad apples out there. Most of the doctors who are denying care – they’re not bad doctors necessarily but they’re listening to the texts books and they’re listening to some of the so-called experts. It’s a few bad apples – it’s like the dirty dozen. But when the docs and the researchers who are getting refused entry into the top journals just based on their name, regardless of how good their evidence is and how good and clean the studies are – and it becomes so politicised that it’s really hard in this space of multi-truthisms for these good doctors to really know how to take care of patients when they’re hearing so much information from the other side.

In medicine there are other diseases where their causality isn’t proven but they still get medical care. Can you comment on that?

Well, most of medicine is that and that’s why it’s the art of medicine or the practice of medicine. The true knowledge of medicine really is in the realm of surgery for the most part because much of the time we don’t know why anesthesia works for example – but anesthesia still happens. Multiple sclerosis, Lou Gehrig’s disease, Parkinson’s disease, dementia, we know what happens, but we don’t know why it happens. And these people are not being denied care, there are studies, there are experimental treatments that are always being done for these folks. In fact, all autoimmune diseases aren’t really understood. Why does the body turn? We know that there’s genetics and epigenetics and environmental factors, but each person has their own story from the genetic to the other causal factors. And so, it’s really quite astonishing that in the face of a disease where we know one of the pathogenic agents such as Borrelia which causes Lyme in these patients – whether or not it’s an active infection or a dormant infection or a hyper immune or then autoimmune infection – these patients are not being treated in any capacity.

What do you think the solution is to the problem and what do you think the impact is on patients?

Well, I think it has to be multi-pronged. I think the science needs to continue and I think governmental action needs to continue and needs to have broad perspectives. I think that stakeholders of all kinds need to have a say and I think that funding needs to continue and it should incorporate many different viewpoints – not just whether it’s an autoimmune or psychiatric condition. Unfortunately, though, I think that much needs to be done like was done for HIV/AIDS and this has to be a patient-advocate-driven movement. It often is and it often is the patients and their loved ones who are driving this. We still don’t have a Magic Johnson, for example, who really turned the whole HIV/AIDS movement and brought so much funding and so much recognition to the disease and we’ve had some amazing advocates who have made such a difference and we need more of that.

Absolutely – and so, while this politicisisation is impacting health care what is the impact on patients where, in Australia right now, it’s an average of 10 years to diagnosis as our survey shows? What is the impact for the patients’ quality of life and their potential outcome back to a high quality of life or full recovery?

Well, the longer one stays sick, the harder it is to get them better. For them to get better – there’s the infection at the root but then there’s also all the damage the infection has caused. The metabolic changes that happen, the epigenetic changes that happen, the body burden, the organ fatigue, the cellular mitochondrial damage that happens becomes so extensive over time. The adrenal fatigue, the cardiac exhaustion, all of these things happen not to mention the loss of relationships, the loss of dignity of patients, the fear, the post-traumatic stress which becomes really part of almost everybody’s disease story. Because most people – whether it’s denial from their doctors or disbelief by loved ones and friends – or loss of community – not to mention the financial burden that goes on from being un-diagnosed. And then, when you get diagnosed the exorbitant treatment because we do know that when these patients come in after 10 years, that antibiotics by themselves don’t often do the trick as it were.

One needs a very broad approach, we need to right the hormonal changes, we need to help support the metabolic changes, we need to do – in my experience – a tremendous amount of integrative care. There’re so many health systems that are outside of allspathic medicine that have been used for hundreds or thousands of years, that offer so much support for these folks and bringing these patients to these practitioners is expensive and unbelievably difficult. So putting very complex plans together is quite a tremendous amount of work on both the patient and the provider’s part.

In your introduction, you said you focused on complementary medicine and functional medicine. What aspects of medicine do you bring together and can you explain this? There are quite a lot of people in Australia who actually don’t have any treatments – I’m one of them. So, what path are you looking at obviously typical or stereotypical modern or Western medicine, functional medicine and integrative or complementary medicine? Can you describe those or expand on those for people who possibly haven’t had exposure?

Sure. So, there’s allapathic medicine which is primarily when  there’s a problem and you use a chemical agent to fix the problem either to reverse the problem, to attack the problem and very rarely to support the problem. And so that’s your typical Western medicine where there’s studies that are double blinded, evidence-based studies which prove that one agent being used will help somebody more than the agent not being used or even a placebo being used. And that’s great when it works. There’re some really exciting things that are that are happening with certain new medications against the agents etc and that that’s fabulous.

However, for many of these patients with chronic conditions, it’s not just the agent that’s causing the problem and Western medicine doesn’t address that. And so, in that situation, we have to use herbal medicine oftentimes, we have to use other kinds of body modalities whether it’s neuro-plasticity retraining – meaning to help the brain relearn things through sometimes you can use electricity or electromagnetic devices, there’s quite a bit of research in the neurology field about this. There are other body modalities that are much older such as Ayurvedic medicine which is an old Indian form of medicine. There’s a traditional Chinese medicine which uses herbs based on a whole different paradigm that also uses things such as acupressure or acupuncture. There’re different kinds of massage, there’s different kinds of meditation. Of course, meditation can be amazing for helping to connect the body and the mind to take away that stress response that illness seems to cause or does cause.

There’re also various kinds of light therapy. There’s Mallory forms of healing that are very deep tissue massage which aligns the body in different kinds of ways. There’s Feldenkrais, there’s Rolfing, there’s somatic experiencing, all these different things to help balance the body when it’s fighting something that it helps the body not have to fight so hard. Because one of the problems is, one of the reasons patients are so sick yes, it’s the spirochete, yes, it’s the co-infections or the agent in question – but it’s also how the body responds to fighting this infection. And what happens is, is that we build up so many defenses to try to attack this organism and we do it and efficiently – and as a result we create sometimes more problems than there were initially. And so, when people have pain and when they have nervous system issues it’s not necessarily a direct attack by the organism all the time – it’s our body’s response to that. And so Western medicine doesn’t usually address those forms and so we need other forms of treatment whether it’s German biological medicine or homeopathy, Isopathy and other forms of medicine like that can be remarkably useful.

It’s interesting that you say this because I was obviously very much allopathically trained and critical care is the area that we do a fairly good job in modern medicine. But in my last nursing job, I was a nursing unit manager of a chronic fatigue clinic and I worked with some amazing, medical minds in that clinic and they brought up that medicine is an art and it needs to be flexible – it needs to be moving with the patients and it needs to have that open and innovative mind and approach to it because we don’t know everything.

On another topic, Dr Harris, one of your patients is called Natalie and we talked about the delay and the burden of disease when someone’s had a real delay. Natalie’s fairly unique in Australia in that she’s recognised by her work covering insurances as contracting Borrelia burgdorferi – the North American strain – at her work. She worked as a Parks Warden and she’s very medically fragile right now. We’re working really hard to get her medical care in Australia and right now we’re up against so many blocks. So, what happens when that effective medicine hasn’t hit the mark today or when people are denied that? We really need to advocate for her for some of the treatments she was able to attain from you in California because when they’re removed, she’s sliding backwards again. Can you comment on that?

Well Natalie is a very interesting individual and what you find with some people, for example, is that people become very reactive to any treatment and so even using a very small amount of a medicine or an herb or another agent of the body becomes remarkably reactive. And there’s some new theories about that. Bob Naviaux talks about the cell danger response; we know about the stress response and now we know about mast cell activation syndrome and all of its associated issues. And so many patients we have to approach very, very delicately. We have to kind of almost do a dance with the body to get the body to actually receive some of the treatments that are good for it because the body begins to look at everything as a threat. And so, you almost have to go around the body’s awareness for it to receive the right treatment. So sometimes we can use things to help modulate that response. We can use gamma globulin which is immune globulin from donors, and we can use other modalities such as plasma exchange Pheresis or Apheresis where we pull out some of the antibodies or some of the waste products in the body. Sometimes we can use membrane exchange protocols using things like lipids, intralipids or phosphatidylcholine to try to get the body to respond. Then once we get to that certain area, we can usually move in and address the various infections.

When someone like Natalie, who has a whole host of infections and co-infections – maybe Lyme is at the core of it – we have to sometimes work on one at a time and then initiate another one. It’s curious because many of these organisms – even though the symptoms are present and each organism can cause so many symptoms sometimes – as part of the treatment all of a sudden symptoms will change and they’ll be primarily be let’s say – shortness of breath and air hunger and headaches and more nervous system issues – and then we’ll treat for the babesia or one of these red blood cell parasites and then the symptoms will change again. And so, the symptoms morph a lot. So, the treatment can be long because we can’t safely use seven or eight antimicrobial agents at one time.

The beauty of Natalie’s course is that when she gets the right treatment. she feels it fairly quickly. If it’s the right treatment, she can tolerate quite heavy treatment and it does work but it doesn’t continue to work if we can’t do it long enough and sometimes we are lacking in the right agents and the cost of some of these new medications is just so exorbitant. So, we need time to be able to learn that dance with each person and it’s just not reasonable for someone to come the United States and be treated for 9 to 12 months which is what she would need to hopefully recover. She recovered the first time and then she was unable to continue treatment and then suffered for several years after that and then came back and was unbelievably sick. And so, we were slowly able to start bringing her out and then she couldn’t stay and it’s just she needs to continue treatment in Australia. So we need the docs and we need the insurance and we need the nation to rally to support her.

Is it correct to say that for some people, extensive or long-term disease can result in a secondary autoimmune response?

Yes and it’s whether it’s from the same kind of concept as a cell danger response or more like a mast cell activation which is primarily but not completely histamine based. But yes, there’s definitely an auto immune response that has antibodies or a situation were we have our body attacking ourselves through a whole bunch of different mechanisms. And I think that we’re slowly beginning to understand how we can do this in a safe way. So many of these so-called bio-modulators, biologic drugs – they’re immunosuppressive – and so if someone has a very active infection and you use these immunosuppressives, they can be devastating. I’ve seen people die in this situation. It just horrible where people have used Tumor Necrosis Factor, alpha blockers and things like that in the face of a very active infection.

So, that mechanism – even though Tumor Necrosis Factor as a chemical is one of the things that causes so much pain and suffering – we can’t just block it directly like that. While there’s so much controversy and so much infighting between those practitioners who think that this is an active infection alone and so many others who think that it’s an autoimmune alone, I think that there is a place for common ground where we can utilise many of these biologics – whether they’re pharmaceuticals or a more natural approach – to deal with the autoimmunity. Because, if it is autoimmunity or hyper immunity which is probably more what is actually the case – if the body’s trying to do the right thing in a sense but it can’t find the bugs or doesn’t have the right systems to kill the bugs and so it uses over-exuberant strategies and in so, causes damage to the body whether it’s through antibodies or whether it’s through other forms of cellular killing. It’s a response to try to address the infection and so you don’t just want to dampen that completely, you want to find a way to get the body to work more efficiently to modulate the immune response, not suppress or destroy the immune response.

Natalie also wanted me to ask you to talk about Ketamine and its usefulness in some situations.

Ketamine is an interesting drug. It’s been used the animal or the veterinary world for quite a long time for anesthesia. It’s also been used in anesthesia in a limited way in adults and children for that matter too. It’s been the subject of a Time Magazine cover a few years ago as a novel treatment for depression and it’s an amazing treatment for depression; it’s an NMDA receptor antagonist and it can almost reset how the body experiences stimuli is the way that we look at it. It can be quite a dissociative, not quite hallucinogenic but more dissociative drug-  so it can be quite fear inspiring for some people but there’s definitely ways that anesthesiologists and other practitioners who utilise Ketamine can make it less intimidating and less troubling to ingest. It can be used in an IV form or it can be used orally, sub-lingually and nasally. It’s amazing for anxiety, for post-traumatic stress, for pain – it’s phenomenal for pain, for severe depression and can help the body recover in numerous ways. I don’t think it’s a standalone agent by any means and it’s very limited and can have some side effects for sure, but it can be very useful as well for many people.

I just want to acknowledge that it’s highly unusual for us to speak about an individual patient. But I work with Natalie daily, day and night sometimes, and she’s specifically asked for that so this has been with her permission and I also wanted to acknowledge Natalie because everything she does for herself is because she’s got such a huge heart and she’s fighting also for every one of you. If you’re watching this and you’re sick and the reason she wanted this highlighted is to offer you hope and education. So, Natalie, thank you for all you do on behalf of others.

Now, back to a few more general questions if that’s okay. What are the challenges with diagnosis and testing for tick-borne diseases or other vector borne diseases?

Well, there are a lot of challenges. If we’re talking about Borrelia – whether it’s Borrelia burgdorferi or relapsing fever Borrelia which is another species that seems to be more and more common in Australia – there’s not a lot of organisms in the body comparatively micro biologically speaking so it’s hard to find those organisms themselves. So, there’s these direct tests which are looking for the organisms and it’s hard to find and then there’s indirect tests which look at the body’s awareness or response to those organisms. Whether you’re using T cells or B cells, making antibodies for Borrelia burgdorferi doesn’t actually elicit a very large response, especially later in disease.

Maybe, early disease in there may be a nice risk response for about 60% of people but this leaves 40% for whom it doesn’t. But in later Lyme, if you’re looking for antibodies or the body’s awareness of immune cells against the infection, it’s very uncommon to find a huge amount of them. And so, the problem is that the testing strategy which is now in place is called the two-tier system. The first tier, one has to often get through in order to get to the second tier. The first tier is based on the quantity of antibodies. You use a what’s called an Eliza test, or an IFA Immunofluorescence Assay test that measures the quantity of antibody – the total antibody against the infection and Borrelia doesn’t inspire or elicit a very large antibody response.

So most people never get to the second tier which is the Immunoblot or Western blot which actually looks at specific antibodies but doesn’t look at the quantity of them after it gets to a certain threshold. It’s more of a qualitative test rather than quantitative but then it’s much more specific than the first-tier tests. So, the tests are very good tests and I think that when one combines the Immunoblot or Western blot and doesn’t really pay attention to the first tier and go straight to that second tier test, then the tests are very specific and their sensitivity isn’t terrible. It’s better in earlier disease, worse in later disease and it’s definitely worse in children who are born with Lyme and their body sometimes doesn’t recognise the agent as foreign.

But if one combines T cell tests and B cell tests with these antibody tests and direct tests such as DNA or PCR testing and hopefully in the near future RNA testing – and even farther in the future accurate culture testing to actually look for the organism growing, I think that we’re close. I think there’s definitely some exciting technologies on the horizon, I think that the diagnosis part if you look the right way you’re going to find at least 90% of those people. It’s just you have to look correctly; you have to look right, and you have to look at…. One of the problems is that even the Immunoblot or Western blot, there’s different proteins on the surface of the organism and it’s the antibodies that look at those various proteins on the surface. These proteins kind of like stick just coming off the surface and in early Lyme, there’s different proteins, there’s different antigens, there’s different proteins than are there than in later Lyme.

The tests are only generally made to look at those early tests. The tests were made for surveillance purposes. They’re made to see a in a very general way how many cases there were in whatever state in America at the time – they weren’t meant necessarily for diagnosis of a specific individual. It was very population-based tests that they dumb down a little bit. But in later Lyme in someone who’s had Lyme for more than a year there’s different antigens that these organisms are expressing. These organisms are very smart, very hearty, very survivable and they do that from switching what their protein, what their clothing looks like as it were and so it looks different to the body later than it does earlier. And so, if one can take that into account, the tests are not terrible if you’re looking at it right. In our case the Center for Disease Control tells us to do the two-tier Eliza blot Western blot but we’re going to miss patients who’ve been sick for more than a year, we’re going to miss at least 70% of those cases. It has been my experience. The literature’s variable but I would say 70% is what we’re going to miss if we’re just doing the two-tier testing and we’re not incorporating DNA testing, we’re not incorporating T cell testing.

So, the diagnostic challenges are really about communication. And thankfully the patients all over the world have been amazing because it’s the patients that now know this, it’s become quite a community and it has been in a sense like the HIV movement. We don’t have people mobilising on the streets in the hundreds of thousands like we did in the 80s, but we have quite a remarkable community which is trying to teach the doctors, but the doctors aren’t listening right now.

What is best practice for diagnosis?

Well, that’s a hard call because there is the clinical picture, yet one has to take. So, I think the best practice is to listen to the patient but within that rubric looking at the likelihood of tick exposure, considering travel, considering animals, considering the possibility that one had exposure to a tick. Now we know that there’s theories about other forms of transmission but just talking about ticks here, knowing that people do travel, that people do spend time outdoors, that people have pets, that people have loved ones that have traveled for example. So, considering the likely possibility of tick exposure and looking at a constellation of symptoms. If there’s several body systems that are that are affected once you consider it I think all cases of multiple sclerosis should consider and at least do testing to rule out a spirochete infection, I think that in many other conditions that it should be ruled out if nothing else. So, it’s keeping an open mind about the possibility I think that’s the number one best practice.

But within that I think doing a Western blot or immunoblot and that includes some of the proteins that you find in later Lyme and then if that test is negative possibly doing DNA testing and sometimes what’s curious is that what we’ll do in our practice and I found to be quite effective is sometimes we’ll even use a diagnostic challenge as it were. So, we’ll do a challenge test, one of the ideas being that these organisms sometimes are oftentimes can be inside of our cells not in our bloodstream where the immune where the immune cells are. So, if they’re inside our cells we need to get them out. So, if we could kill them for example and some of the pieces of the organism will come out of those cells into the bloodstream then the immune system can have time to recognise it if it’s not hiding. So, we’ll use sometimes an anti-microbial challenge for a few days and then at the right time then repeat that Immunoblot and Western blot. Sometimes we’ll do the DNA testing in conjunction, sometimes we can do urine testing, that’s prevocational, we kill some organisms if we think that they’re there with informed consent and all that knowing the risks and benefits of the treatment. It’s not appropriate for everybody but the other part of the best practice is for the practitioner to work with the patient on an equal footing or in a collaborative way at least; if not equal footing at least collaboratively and let the patient decide that do they want to maybe take a risk with some antibiotics in a short, controlled way if that means that it can pull organisms out into the urine where then we can we can see them? And so, I think best practice is listen, collaborate and then do the proper testing.

Fantastic, and you’ve  brought up a good point there about people having a human right to best practice health care and that people with multiple diagnosis and many diagnoses are out there where causality is unknown. I also have a human right to have Lyme included as part of the differential. So, I had Alzheimer’s, dementia, lupus, sarcoidosis and fatty liver and all these sorts of random things that were identified certain things that went wrong with my body and Lyme wasn’t included as part of my differential diagnosis without me fighting and knowing something was wrong and looking worldwide.

So, what other diseases do you see coming into your practice that you right away think you need to include Lyme as part of your differential?

So, ME, CFS, myalgic encephalomyelitis, definitely mold illness we get quite a few patients with mold illness and we also look at Lyme, fibromyalgia, rheumatoid arthritis, really any non-traumatic musculoskeletal disorder we’re looking at other causes such as Lyme. We’re also looking at patients with severe profound depression, we’re looking at patients with bipolar disorder, patients with severe anxiety disorders, we’re looking at major hormonal disorders after neoplasms have been ruled out of course and I think that one has to consider Lyme in so many different diseases. In dementia of course, we’re looking at Lyme and in almost all of the neuromuscular diseases that aren’t direct genetic basis we’re looking at tick-borne diseases as a possible cause. We’re not always finding it; we need to play devil’s advocate. There’re so many naysayers and there’s so many people out there who are saying that we’re over diagnosing Lyme or that we’re seeing it wherever we look and that’s not true. We have to take that viewpoint that we’re going to look at everything and Lyme will be one of those things but we’re not going to jump to Lyme as the causal agent.

And what do you see presenting in kids? They’re sort of under-recognised segment.

We see anxiety quite a bit, we see motor ticks, we see listlessness and poor school performance, we see a loss of previously met milestones, of course, we see pain, we see arthritis, we see all sorts of things. Primarily it’s neuropsychiatric symptoms that we’re seeing.

I’ve seen that here in this country it’s even more sad when the kids are in trouble.

So, is there anything that I’ve missed asking you that you think is really important to highlight for the picture for Australians that are sick and their family and their doctors?

There’s hope out there and that there’s treatments that work most of the time. When you’re using just antibiotics, it’s going to work a lot of the time and when you incorporate other modalities and you’re open to sometimes non-evidence-based modalities that the treatments are going to work most of the time. Sure, there’s going to be times when nerve damage is so severe that someone who has neuro borreliosis or neurologic Lyme is presenting as Lyme or ALS sometimes we’re not going to be able to repair the damage that was done but many times or most of the time we will be able to arrest the progression of it. So, the number one thing is that there’s hope.

The number two thing is that the patients have to advocate for themselves and their families have to advocate for the patients who can’t advocate for themselves and the doctors need to be retrained and there needs to be more dialogue between the people who believe that there is no Lyme and or that there is that these aren’t manifestations of Lyme and those others who do understand the breadth and scope of this disease. And so, the people need to get together and communicate more and there needs to be more funding because the money is going to drive it, the money’s going to hopefully drive it in the right direction. But at the same time, it needs to be earmark, the funding needs to be earmarked correctly. There’s a prominent university that received quite a large grant to study Lyme and the donors had all well intentions to look at Lyme as an active infection but the funding was misdirected and went to Just looking at autoimmune mechanisms of disease and so the funding was in a sense partially wasted I should say. While the research may be useful it’s not going to drug get to the heart of the matter. So, I think that if people are going to be funding universities are different projects that they need to be very careful and how they have the funds earmarked certain ways.

And then I think holding people accountable who are unable or unwilling to consider alternative viewpoints. I think that at the end of the day it’s all about patients getting better and if we can help them get better with non-antibiotics, I’m all for that. And so as long as we keep the true goal in mind, and we’re held accountable that that’s probably the best thing that we can do. Of course, that involves governments and having governments really explore the extent and scope of this and addressing it at the highest levels.

And so, what would your call to actions be to government or health policy makers in regard to perpetuating the myth that Lyme is not endemic in Australia as the only country in the world, the only continents in the world that makes that claim?

To listen to all the stakeholders and to look at the literature. There were animal studies in the 1950s, they found it in the 1950s and there’s been numerous animal studies until the 80s and then the human studies since the 80s; it’s there, it’s it is absolutely unequivocally they’re both borrelia, sensu latu, Burgdorferi sensu latu well as relapsing fever borrelia. We know it and the data we keep seeing similar percentages of patients who come in with similar symptoms in study after study. So, if you don’t believe it I’m telling the government then go test the ticks, go do numerous tick studies and see what’s inside those ticks.

Thank you. And we are also currently are in a situation with this politicisation and denial is that the doctors that are doing the right things by patients have been shut down gradually by the regulatory bodies. Now we’ve got at least 16 doctors that have been either restricted from treating, doing the right thing by Lyme patients or completely de-registered. On previous videos I called them in the trenches which might not be accurate; they’re on the front line and are the ones that are being ethical in their healthcare, what’s your words for them today?

It’s hard because it takes a courage to do that. And then when we lose one of the docs there then the next person may not be so courageous and so it takes them that much more courage to stand up for what’s right. And so, it is the same kind of courage that one needs in the face of racism, for example, or many of the other aspects of life in which we need courage to speak against authority, truth to power. But at the same time, I think that doctors need to band together, practitioners need to band together, I think people across different disciplines need to band together and work together. I think that the social justice advocates, social justice lawyers I think need to work with physician groups and to work with advocate groups and to work with…… I think if one also could study, I really think that if one studies the socio economic, political economy of Lyme from the 1970s and one can really look at it from a multi-disciplinary fashion not just from a scientific standpoint but to actually look at it as a social, economic phenomena that we can understand how these impressions came to be.

And one last question, you’re talking about that there needs to be a dialogue and they’re actually in the last say 3 years, oh no, probably since 2012 the dialogue was started. But from my perspective on watching that and having lots of hope over the years what I’m seeing is that it’s just like the ticking a box – we’ve done that, we’ve listened but the action hasn’t followed. That the denial of the people who actually have experience like yourself of getting 75% to 80% of their patients better. That multidisciplinary approach right now that’s planned, or the draft approach isn’t looking for people experienced in treating Lyme, professionals experience, they’re looking sending them out to all the practitioners that have denied care for decades now. So how important is it? You know, you’re talking about the human justice and the legal justice experts, how important is it that they actually not only listen but take action and give credible weight to those who have had the experience of helping patients?

Well, where we’ve work on that here there’s been some very, very supportive Congress people and Senators and other people at different levels of government and so, it’s rallying around those people. Here in America it’s about votes and getting these folks re-elected and so that’s, that’s one way that I think we can encourage these people to stay the course. But it’s so important that if they’re going to support what we need then we need to support them as well. Many of them do have skin in the game, they have family members or such that have been bitten and been afflicted but in the case of those who don’t it’s presenting the evidence and presenting the numbers, showing that numbers of people who will support them if they’re being supported.

And what’s in your heart to leave people either those sick, their families, their doctors with today?

That there’s some brand-new treatments out there, it’s not going to work for everything but there’s some amazing treatments that might be much easier to tolerate, that might be much quicker that it’s not going to be 10 years of treatment that sometimes 6 to 9 months, we might be able to knock out a lot of these cases of Lyme and Babesia. There’s some fabulous stuff that’s happening.

There’s a lot of people who are interested in this disease, it’s becoming unbelievably common. As far as people aware of it around the world there’s so much international connection. Doctors from all over the world are coming together, patients are coming together, it is somewhat of a global movement to put this disease on the map and to eradicate it. And so, things are really happening, and the more people can help at an individual level the quicker this is going to work.

Dr Harris, thank you so much. And for those of you who are losing hope right now, please remember there have been many times in my journey with Lyme when I’ve thought this is it and I had a significantly serious suicide plan and something was around the corner that I didn’t know was there. So anytime you go there know that there’s something around the corner and there is hope for you. So, reach out to us, we have the live support program support.lymedisease.org.au. If you’re feeling mental health challenges or if you’re not okay reach out to us to help. And thank you Dr Harris. I really appreciate your time today.

Thank you very much.

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