by Sharon Whiteman
I recently spoke to Dr Richard Schloeffel at length about his journey into complex diseases, what drives him to keep going and his message to all doctors.
His call to action to the Australian government and medicos alike is that “Australian Lyme needs a patient-focused approach, not a disease-focused one“.
Dr Schloeffel is a medical director at the Grove Health Pymble in Sydney. For the past 23 years, Dr Schloeffel has focused his practice on understanding and managing complex and chronic disorders. He supports numerous doctors across Australia in the diagnosis and management of many complex patients who unfortunately have fallen to the medical system and as yet don’t have a voice.
Watch the full interview, read the full transcript or continue below to read an excerpt.
Excerpt of the interview:
Let’s start with how you got into complex diseases such as HIV/AIDS and how that influenced you?
Just before graduating as a young medical student, way back in 1976, I worked at a hospital situated in a small town in Papua New Guinea called Milne Bay Province, Alatau. There were around 135,000 patients diagnosed with leprosy, malaria and TB at this hospital (provided by the Australian government with considerable resources) with only one doctor and us. Some patients showed recovery after standard treatment of two years of antibiotics. As a young medical student, this got me thinking as to what I wanted to do in medicine. I finally decided to do isolated rural general practise work in the third world and study further in China and Europe.
During my journey, I came across many patients with complex disorders. My very first patient had a massive gut disorder, which included gastroparesis, paralysis of the gut, chronic constipation and eventually we found out that she had an infection in the bowel. Luckily, she recovered over a two- to three-year period with the right medication. In the early 1980s, we treated around 2,000 patients with chronic Giardia – a bowel parasite that can infest the gut though the symptoms show up as fatigue, depression or body pain.
My interest developed further in the 1980s when women and children who started developing HIV or AIDS were denied diagnosis and treatment. At the time, there was even a bias against gay men who were not allowed to come into medical surgeries thus, resulting in no treatment at all. With a viral diagnosis being finally recognised, we started to understand the pathogenesis, the disease process that these patients had with many of them getting better or going into remission. While understanding the concept of long-term treatment for chronic infection, initially, we lost around 100 out of the 400 or so patients that we treated. Of these, not all were gay men. There were women and children as well, who got infected due to contaminated blood transfusions.
In 1993, I attended a lecture by Professor Garth Nicholson. He spoke about an interesting Gulf War illness where tens of thousands attenuated changed mycoplasmas, chlamydia, other infections, which were very altered in their state causing significant abnormalities and illnesses. Many of these patients had unexplained symptoms: pain, cognitive dysfunction, headaches, mood disorder and as they developed this disease there didn’t seem to be an answer. So, I started to send some of the samples from patients having chronic fatigue syndrome and fibromyalgia to Prof Garth who was developing PCR testing (polymerase chain reaction tests). Mycoplasmas are the most common bacteria, which I believe, causes chronic fatigue syndrome and is very hard to diagnose.
That’s when I finally decided to move completely into chronic and complex disorders focusing on chronic fatigue and fibromyalgia. I gained enormous experience in the 90s and early 2000s by giving lectures, meeting other scientists and doctors. In 1997, I eventually treated a patient who was diagnosed with Lyme disease and had been bitten by a deer tick in Norway. He recovered with some amount of damage after being treated for several years.
Many patients are denied medical care when the cause is unknown, but it takes a unique doctor to look beyond the unknown…
I have a patient-orientated thought process where I often listen and understand what’s going on. It may not be a clear diagnosis when you hear their story and you might need an hour, an hour and a half with each patient to delineate all the symptoms, all the complexity, all the things that have been done before which actually gives you the answers but have not been recognised. The most important thought process that a doctor needs to have is to understand that a person is ill. People come in with their carer or their partner or their parent. The patient is 30 and the parents, who have accompanied the patient, start telling the story because the patient is so unwell they can’t remember or talk to you and they’ve got to lie down or they’re fainting in the room or having a seizure. So just being able to hear the patient with an open mind to be able to diagnose their illness and then have a thought process that actually thinks a little bit differently is really essential.
What drives you to keep going through the political misconceptions and misunderstandings of Lyme disease?
After seeing the difficulty of my patients in 1976 in Papua New Guinea, seeing children with tuberculosis (TB) and people losing limbs, horrible things like leprosy and 400 people a day coming in with malaria, I have a considerable amount of compassion towards my patients. Because there’s a disconnect between those who have the power to change things and the ability to change it, I have a moral, ethical and a medical position to actually tell the truth and truth in medicine is very important.
Another issue is having a validated pathology and not just validated guidelines. If you don’t join the dots between the vector that bites you or the sexual transmission to some patient or the mother giving birth to a child who is born with a vector-borne disease, then that’s an extreme worry and if we miss those patients because we haven’t thought about it we primarily miss them because the pathology is not good enough. Vector-borne diseases such as Borreliosis, Bartonella, Rickettsia, which are very common in Australia, Babesia, Ehrlichia, Anaplasmosis and Q fever suppress the immune system, so when a normal blood test is done, it turns up negative. Eliza tests performed in America for bacteria present in that country turn up 40% accurate whereas in Australia it will not work for the kind of bacteria that we have. Therefore, developing the science behind the diagnosis is important.
Is there anything else you’d like to say to those doctors who are possibly open-minded but are fearful?
Firstly, I’d like to say is to educate yourself by attending meetings, talking to your colleagues and specialists. Secondly, listen to every patient who comes in with a chronic illness and put it in your differential diagnosis and find out what’s the best pathway to make a diagnosis. Last, but not the least, make sure your patients are educated when they’re seeing other doctors. Sometimes they need to be quiet about what’s happening just for their protection and protection of you but don’t stop treating it because you fear the system, the system will change.
Finally, what would you like to leave people with today?
I think the most important thing is to for all patients out there is to get a supportive team around you. No matter what illness you’ve got, whether it’s a chronic illness, related to vector-borne diseases or not a supportive team is necessary. This team could be your family and your carers. Find a doctor who’s well informed and compassionate, keep putting your hand up and talking to those in power who can change things — politicians and local members. Contact the health department. Do whatever it takes. Don’t lose hope because necessity will lead to change, necessity is the mother of invention. With the conversation and the work of the Lyme Disease Association and these groups of lecturers, we’ll go somewhere towards a paradigm shift in medical support for those who are so very ill. I hope that these talks will go out to all the appropriate people including the DSCATT people who are putting the guidelines together, the Australian Government, the IMA and the College of GPs, so we can have a proper discussion about these illnesses and diseases. This will help you and protect you and hopefully lead you down the treatment paradigm.