Differences between Lyme and other infectious diseases
With any new area of research there is stigma. A lot of people did not want to touch people with AIDS as they were from special risk groups that society did not accept, whether it be sexual preference or race or socioeconomic group. But Lyme affects everybody, from rich to poor, while the medical profession stands back.
So in a different way patients with Lyme are discriminated against and also stigmatised by an elusive diagnosis. When the Lyme symptoms come and go, are widespread and there is no description in the textbooks to describe the condition they are presenting with, many medical doctors seem to think that chronic Lyme does not exist, get frustrated with patients and indeed will label them with alternative diagnosis. Such labelling leads to both discrimination and stigmatisation of these patients.
To me it means that we need to write new textbooks, to describe these findings, not come up with labels that put patients into a ‘basket’ that does not fit. While most patients with chronic Lyme and co-infections have been managed and treated by ‘Lyme literate’ doctors, they have seldom published their results. They are clinicians, so publishing is not a priority to them. Lyme doctors should do a better job cataloguing and describing cases of their patients, to get it in the medical literature.
On the other hand, there is much more of an academic influence with the IDSA doctors, and, while they have seen many less patients, they have the clear edge in terms of publication and getting their messages out into the medical literature. Interestingly, I tried to publish a review on the issues of Lyme and co-infections, some of the issues in diagnosis and the schism between the IDSA and ILADS doctors, just as a position paper to stimulate new thinking.
This was an ‘invited’ review by a journal that I had successfully published reviews on HIV and Hepatitis in the past. It is entitled Lyme and Co-infections: an International View. Five referees responded in quite an acrimonious and unhelpful way, different from how I have ever received feedback from other submitted publications. It was an eye opener to me.
Comments were made like "The major thrust of this manuscript is more opinion than fact or critical review". "Beyond the recounting of the epidemiology, clinical manifestations and the history of Lyme disease/borreliosis, what facts there are largely represent selective interpretations and mis-representations of the literature". "The authors in their judging of the literature appear to give the same - if not greater - credibility to such splinter groups as the International Lyme and Associated Diseases (ILADS) and the German Borreliosis Society as they do to an established professional medical society, the Infectious Diseases Society of America (and by extension other long-standing professional societies representing neurologists, rheumatologists, and paediatricians, among others, in North America and Europe)".
These kind of comments from ‘unbiased’ reviewers were quite an eye opener. Raising the questions I have: why is this disease so different and why were the reviewers so angry?
I am also quite surprised that so little effort and energy has been put into understanding the complex interaction of infection, inflammation and auto-immunity that seems to be present with these conditions, given that the disease was identified in the 1970’s and we really do have great scientific technologies to make groundbreaking discoveries for other infectious diseases.
When an immune system gets increasingly weaker, and these findings are clear from many of the patients I care for with these infections, people will suffer from multiple infections, be more susceptible to new infections, and be more at risk for reactivation of chronic latent infections they contracted many years before.
There is a wide body of literature about this phenomena for patients with other immunodeficiencies, HIV/AIDS, transplant patients on immunosuppression and the like. While doctors understand this well with other diseases, they do not accept this with chronic Lyme. Patients with Lyme get multi-system disease, and they appear to respond to not just treating with antibiotics, but also a series of interventions to boost their immune system and to decrease the inflammation. Unfortunately, the mechanism by how these ‘non-traditional’ treatments work is not well studied and not well documented in the medical literature, but they do work.
It is an uphill battle, dealing with this poorly understood condition and hugely politicised condition, but it is a battle worth fighting. I try to stay out of politics as much as I can and just try to get my patients better and to further the knowledge. Yet I have never seen the kind of obstruction of access to care and treatment options or the violent attacks on my colleagues in any other disease.
I call the Lyme Wars the “Lyme Paradox”: it simply doesn’t fit. Why would doctors and society work in such a non-compassionate way? There are theories as to why this is the case, as is presented in the recent lawsuits against the CDC, IDSA doctors and insurance companies. But all I can say is that it puzzles and disappoints me.
My best hope is that when my patients get better, they can join the “Lyme Wars” and advocate for better resources, knowledge and education. Or simply go back to their lives and be a good parent, sportsman or entrepreneurs; get on with their life as they were before they had the bad luck of running into a tick, being in the wrong place at the wrong time.
HPV vaccine damage
I was asked by an Irish group called ‘REGRET’, which was formed by a group of parents after their teenage daughters became severely ill following their HPV vaccination, to see if I could help them. Some of these 10-12 year old girls became very unwell immediately after their vaccination, but some showed signs of severe chronic illness such as ME, Fibromyalgia and different neurological diseases years afterwards. They looked back and attributed it to the vaccination itself.
A number of these families consulted with me and I started to suspect what had happened. I stepped back and thought “What do vaccines do?” Vaccines stimulate the immune-system, no matter for what disease. I had also seen reactivation of infection in patients who had been on immunosuppressive agents, patients who had suffered major trauma and stress, and patients who had developed an immunosuppressive illness (i.e. viral illness, Chlamydia pneumonia, mycoplasma pneumonia) that had caused reactivation of a previously dormant infection.
In this select group of these girls I found that they had often low lymphocytes, aberrant lymphocyte markers, and evidence of a latent or sub-clinical prior Lyme or a co-infection, that was activated by the vaccine. They most importantly got better after antibiotic treatment. These were girls who had incapacitating illnesses for years, and were being labelled as ‘chronic fatigue’ and were being advised to go on ‘chronic fatigue’ protocols. I would love to better understand what got them healthy again, but I think it was the antibiotics that treated their Lyme and co-infections.
Of note, I have also seen patients report onset of illness in their children following the MMR vaccine or adults having health issues following a series of ‘travel vaccines’. So I feel the theory of ‘upregulation’ of infection following some kind of ‘immune perturbation’ is a reasonable hypothesis. When I did further investigation on these other patients, they also were found to have an underlying Lyme or co-infections, which responded to antibiotic treatment.
Vaccines are critically important for child and indeed world health; but based on my clinical observations, on a small number of patients who received vaccines, we should be studying these patients, not labelling them as being ‘psychiatric’ or putting them into the basket of ‘chronic fatigue’ and fibromyalgia.
Just because you cannot identify the cause, does not mean that there is nothing wrong with the patient. Maybe you just have not looked far enough, or maybe we don’t yet have the technology yet to make the right diagnosis. I think such labels are just alienating patients and families, and are frankly not helping anyone.
My view is that these diseases are very complex. You got an infection without knowing that it ever happened. You have or you develop a dysfunctional immune system that does not produce antibodies. You develop all these opportunistic infections with a large variety of clinical symptoms, joint, neurologic and psychiatric problems because of a low grade inflammation.
I think there are a lot of similarities to HIV: infection, inflammation and immunity all play a part. Lyme does not kill you as quickly as HIV did, but there are an awful lot of similarities. Lyme can kill you slowly, with progressive wearing down of the patient and their immune system and their psychological strength to be able to resist the infection and the rejection they are receiving from the medical community.
Recently I have had a chance to review the work of the 'Ad Hoc Committee on Health Equity in Borreliossis ICD11 Codes', which has submitted a dossier to the WHO providing them with over 260 references from peer reviewed articles, asking them to address Lyme in the same manner as Syphilis, in their report ‘Updating ICD Lyme Borreliosis codes’.
With other infections e.g. Leptospirosis infection, which is caused by a bacteria often excreted in rat urine, it is know that all organs in the body can be affected. It’s a bacteria which goes into your blood, it can go to your brain, to your eyes, kidneys, liver, heart. That is why infectious diseases are called multi-system diseases: they can damage lots of different parts of the body, depending on how they spread.
We got well described clinical conditions, of which Leptospirosis is just one. It’s a zoonosis, going from an animal to a human, it enters into your body and bloodstream and affects all the tissues of the body. It has been well studied and we understand all of the different clinical manifestations of this infection, but then we have laboratory technologies established to make a diagnosis.
Why we can’t apply the same science to Lyme I don’t understand. And why we can’t include all of the medical conditions that we do know Lyme can cause, outlined in the 260 references submitted by the ad Hoc Committee, and have them represented in ICD codes is a puzzle to me. With these codes we could better understand the extend of Lyme and complications in the world. Without these codes, Lyme does cannot be well catalogued, it’s worldwide impact cannot be understood, and it cannot be resourced and financed or reimbursed for care.
“It’s the virus, dummy!”
Many years ago, when we did not yet understand HIV very well and there were not good antiviral treatments, there used to be an effort in the NIH to promote immune modulation for HIV. It was meant to boost the immune system of patients, so it could better fight the HIV virus. The idea was to give HIV-positive people a vaccine for HIV to stimulate their immune system.
This was just a theory that scientists were using in the NIH. These efforts did not really work. When successful and powerful HIV antiviral tablets became available, the virus became suppressed, went into dormancy, quite damaging the lymphocytes that were being infected by HIV, the CD4 cells, and patients immune system recovered. Subsequently their immune system was ‘normal’ again and they quit getting all the opportunistic infections we used to see.
So that was the way to go, repair the immune system by knocking off the infection. Then the inflammation and autoimmunity settled down, and patients immune systems were able to fight the battle again.
I remember a director of one of the USA National Institute of Health Institutes standing up and saying “It’s the virus, dummy! We have to focus on the virus, treat and surprise the virus so it’s not doing any damage to the patient’s tissues and their immune system.”
We are in the very primitive stages of our understanding of Lyme and co-infections. This is what I sometimes would like to do. Lyme is a bacteria, a spirochete. It gets into your body and causes all sorts of damage. Immunological damage, inflammatory damage.
“But it’s the bacteria. Dummy.”
We should not be calling it Chronic Fatigue or MUS, when we know it is caused by a bacteria. And the bacteria is hard to grow. And the immune system starts to attack the bacteria and causes all this inflammation. The immune system eventually starts to wear down. But when you treat many of these patients with all of these ‘garbage bag’ diagnoses, they get better with the antibiotics.
Antibiotics work against bacteria, anti-virals work against viruses. So when I treat someone with antibiotics and they get better, my conclusion is that this is a bacterial effect (although disbelievers say antibiotics have ‘immunological effects’).
So, I say to the disbelievers ‘It’s the bacteria, dummy’ and find better diagnostic tests to identify these bacteria. Don’t tell patients it ‘post-infectious’ when you are unable to grow the bacteria before treatment, and then can’t grow it during or after treatment.
Of course, not every patient with a ‘garbage bag’ diagnosis has an underlying infection, but very often in such patients the thought of a possible infection is not even entertained.
As an infectious disease specialist, I often say "every medical condition is an infection waiting to be discovered". Lots of discoveries - including Helicobacter pylori causing ulcers - support this view.
Everyone seems to have very strong opinions in this arena, an area with under-investment in research and also an underinvestment in kindness and compassion. Why patients can be left undiagnosed, misdiagnosed, and not given the benefit of treatment with antibiotics, when the clinical scenario fits, is a puzzle to me.
Why the medical community is so angry is also a puzzle to me. They are angry against each other and angry towards the patients. It is a puzzle to me why the CDC, the IDSA, most professionals stick by old diagnostic technologies and do not embrace new technologies. New technology is being used for TB, but the same technology is discounted for Lyme (i.e. Elispot assays). And why they stand firm on their treatment guidelines, and try to enforce them in a rigid fashion.
Evidence based medicine, patient centred care, all of the jargon used in the field, don’t seem to apply with these conditions. The Institute of Medicine has reviewed the IDSA guidelines and find concerns, and years later ‘the band plays on’ without changing their tune. Maybe we need to critically look at all of the published articles in the field, and not just ‘cherry pick’ those that support our biases. And why should we in the medical community be so polarised anyway, as all this does is hurt the patient.
The only ones that truly have a right to be angry, I believe, are the patients who have been wrongly diagnosed and do not get the appropriate treatment in a timely fashion. And then, when they are getting better on the ‘non-traditional’ treatments, to be told that it was ‘all in their head’, and there is nothing wrong with them medically as the test is negative or it is ‘post infectious’. It probably was’ all in their head’, as that is one of the favourite locations of the Lyme Bacteria!
It is simply puzzling to me why the medical professionals are not more willing to think outside of the box, when they don’t have a good alternative or a plausible explanation for a patient’s medical condition. We will need to start working together to solve this together.
Better science, better patient centred personalised medicine, a little more humanity.
Dr. Jack Lambert
Interviewer: Huib Kraaijeveld
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