Answer on December 5, 2017 from Madam Ni Riada Liadh
Marleen, a chara,
I am genuinely thankful for receiving your email.
The issue of lyme disease, its’ diagnosis, treatment and outcome is something which I am very passionate about.
I have already raised the issue of lyme disease specific to my area of South West Ireland with the research service in the Parliament.
We have a serious problem in the geographical area outlined above where there has been a dramatic increase in persons displaying the symptoms of lyme disease.
The biggest difficulty we face in Ireland is that there is currently no public method or facility for the diagnosis of lyme disease in the 26 Counties of Ireland. In order to get a diagnosis, tests and samples need to be sent to Britain. Following this, there is no standard of treatment or model of care.
With the email you have sent, I would therefore be interested in organising a meeting with your organisation in the New year and exploring the possibility of introducing a similarly worded resolution to the one you introduced through the Belgian Parliament but this time through the European Parliament and basing it on a European context outlining the inadequacies of Lyme care treatment provision throughout Member States..
Liadh Ní Ríada
Answer on December 12, 2017 from Lyme-int association
Dear Madam Ni Riada,
Liadh, a chara,
Thank you very much for your answer and your interest in Lyme disease.
If you wish, we can arrange an appointment one day in the afternoon in January in Brussels in the European Parliament.
It would be great if we can make a resolution for Lyme disease for Europe.
To prepare this appointment, it might be useful to send you already the Belgian resolution which is in Dutch and French, so you can already let it translate in English if you want so.
Further down in the email you can read the interview I received from Huib Kaaijveld, which he did with Dr Jack Lambert.
We don’t have perfect tests for diagnosis of Lyme
Dr. Jack Lambert is a Scottish doctor who is currently working as an Infectious Diseases consultant in a public hospital in Dublin, Ireland. He has started treating Lyme Borreliosis patients 20 years ago in the USA and during the last 5 years in Ireland. He has also successfully treated a number of young women who fell ill after their HPV vaccination, which seems to have stimulated a latent Lyme infection to reactivate. In this exclusive interview in two parts, Dr. Lambert shares his experience with different emerging serious conditions caused by complex infections and looks at similarities and differences as to how they present clinically and are treated. Dr. Lambert: I am a Infectious Diseases (ID) specialist that is managing a wide range of different infectious diseases, in parallel with being an academic doctor, research and teaching at the Medical School. In my 25 years career I have seen many different infections in immuno-compromised hosts, like HIV Hepatitis C and those immunocompromised by cancer treatment and transplant recipients. Many of the textbooks describing these infections were written by my former mentors and bosses; some of whom were nominees for the Nobel prize in Medicine. In the last couple of years, it has become very clear to me that there are many similarities between HIV, Hepatitis C, transplant medicine and the many complications that patients with Lyme and co-infections live with. Billions are invested annually into HIV research, billions are put into transplant medicine, but for some reason little money is spent on researching Lyme and co-infections for example Anaplasma, Babesia and Bartonella. Yet these infections can be just as damaging and debilitating as HIV and Hepatitis used to be, before we found medicines to treat these conditions. Seronegative infections My early experience with difﬁcult diagnoses with imperfect techniques was when I was training in Rochester, New York, in adult and paediatric medicine training programme. By default I ended up taking care of the HIV infected pregnant women as well, as few were willing to take care of them in this time period. So I also took care of a lot of seropositive mothers, who had delivered their babies prematurely. My ﬁrst presentation on this subject was about seronegative babies who were born to HIV seropositive Afro-American mothers, which were initially put in the premature nursery but died at home after being released from the hospital. They were dying from what was believed to be SIDS or cot death. When I saw the pathology reports on these children and cultivated the HIV virus from their blood in my laboratory from post mortem blood samples,
I discovered that they had died of HIV and their blood cultivated positive for the HIV virus. Yet in none of these children had the ‘standard’ HIV antibody tests showed up positive. If one looked at the clinical signs however, they were all the same as of the ones of children who were HIV seropositive. The main question of my paper was that HIV and AIDS was masquerading as SIDS. We thought it was SIDS, because it looked like it and nobody had another diagnosis. But looking back, these children were premature, they had had blood and exchange transfusions, they were severely so immuno-compromised that they had no antibodies, and we did not have the technology that we have now to culture the HIV virus. So I learned the lesson very quickly: a positive test is helpful, but if you have a child coming from a high-risk group, who has all the signs and clinical manifestations of HIV and AIDS, while the antibody test is negative, the conclusion is not ‘oh, they don’t have HIV and AIDS”. The proper conclusion is “we don’t have the optimal test”. With Lyme and co-infections I see the same thing. If you have a positive test and you have consistent clinical manifestations of the disease, that combination gives you an answer – but basically it is just using common sense. It is the work of a clinician to put the pieces of the puzzle together. Did somebody have a tick-bite, who is sick with a Lyme-like illness – either acutely or chronically – and the test is negative? Then you should pursue the clinical manifestations and look for alternative testing. Or treat them; even if the testing is negative. We do this for most other infectious diseases, use clinical diagnosis, when testing is ‘imperfect’ or when not available. And when patients get better with our treatment, we say we have had a ‘therapeutic success’. Current situation I work fulltime in a public hospital clinic in Dublin, but I also have the opportunity to see patients privately, often those who don’t want to go into public care for privacy reasons, or for convenience and ﬂexibility. I treat many highly functioning people, both from Ireland and abroad, who want conﬁdential treatment or who want an alternative opinion as they are unhappy with the current opinion give by other doctors. These patients come in for different reasons, travel medicine, HIV, other STI infections, but over the last several years I have seen a sharp rise of the number of Lyme patients, especially those with ‘chronic Lyme’. Because of my experience in America, I have been identiﬁed as probably the only Infectious Disease doctor in Ireland who was willing to see patients with symptoms that were suspicious for Lyme – despite the fact that many of the antibody tests were negative. These patients had not been willing to accept the ‘atypical’ and unknown diagnoses being given to them by other specialists. Awakening So I went through the same awakening with these patients as I did early on with these children who were dying of HIV AIDS. If you see all these patients who have a negative test, who had an obvious tick bite, who were previously well, or went off travelling, developed a fever, came back sick and were still sick 12 months later with disseminated clinical manifestations in the joints, neurology, etc, etc – then you need to take their history seriously, and investigate and treat them properly.
Many of my patients had looked for other Lyme tests, which they had to pay for themselves. Often when their standard (serological) Lyme test was read as ‘false positive’, still the pieces of the puzzle were easily put together, when I took their history. They were previously healthy, went traveling to Lyme endemic areas, came back and fell ill with consistent clinical manifestations of Lyme. Many had short term treatment and had gotten temporarily better and then their symptoms had returned. They may have had neurological or rheumatoid symptoms, and often had been seen by neurology or rheumatology specialists and were given what I call ‘garbage bag’ diagnoses: Fibromyalgia, chronic fatigue (ME), chronic pain syndrome (CRPS) or atypical neurological diagnoses such as “a-typical MS”, “a-typical Parkinson”, “a-typical ALS”. So it was very clear that these neurologists and rheumatologists didn’t know what caused their symptoms, and indeed most of the treatments given to them had not helped them, and in many cases made them worse. Immunologists and hematologists saw many of these patients who also had low white cell counts and were working them up for cancers, lymphomas or similar disorders. But it simply took a look at the history: these patients were previously well, had a sudden onset of illness, were coming from a Lyme endemic area, they had low white cell counts and they had fevers and sweats. It wasn’t only low white cell counts; they had manifestations of multisystem disease. Some of the more forward thinking hematology specialists then referred these patients onwards, as up until then no one had entertained an infectious etiology. Lyme and co-infections are not on the ‘radar screen’ of most specialists in Ireland, and they are not aware of the complexities of the diagnostic issues. They follow the IDSA mantra that a negative test means you don’t have it. So on top of my standard clinical public hospital practice, this is what I have started doing over the last ﬁve years with some 500 patients who have been treated. Unfortunately I have become too busy to keep accurate statistics on these patients, but in about 70 percent of the people, who follow my treatment regime, there is recovery. Either fully or they improve so much that they can get their lives back. The Irish governments only reports a few dozen cases over the last years. On their surveillance website, they only keep track of ‘neuroborreliosis’, so you have to end up in the hospital with a lumbar puncture to be counted. So what about all those with a bite or a non speciﬁc manifestation, who does not end up in the hospital? They don’t count? I would say that many additional cases are been missed. We have imperfect surveillance of the incidence of Lyme in Ireland. We don’t keep records of patients with these conditions, so it is easy to say there is no Lyme in Ireland. And its not all about Lyme; there are other infections you can get from a tick, the co-infections; not on anyone’s radar screen it seems. This may be a reason why my colleagues don’t know about Lyme, but it’s quite surprising to me. I don’t really know why my colleagues quote the national government statistics, when they know they are not accurate. In contrast there are the Sexually Transmitted Infections (STI’s). Everybody is aware that the statistics about STI’s are also not well documented and recorded in Ireland, but we all know there is sex in Ireland and people get STI’s. And we know there are a lot more cases of herpes and genital warts, as the under reporting of these conditions is well accepted. My colleagues accept these statistics, those of STI’s , but do not use the same thought process when it comes to Lyme.
We have Lyme endemic areas in Ireland, where ticks are found in large numbers and people pick the ticks off their bodies and their pets bodies in the summertime. But still, the government and our doctors don’t believe these conditions exists in any signiﬁcant fashion. Vets seem more aware and keyed into this issue in Ireland than the medical doctors. There seems to be a “Lyme denial” in this country, as there is in many other countries, including those within the EU. IDSA & ILADS After my qualiﬁcation as an Infectious Diseases specialist in America in 1991, I became a member of the IDSA. Although I’ve never been active politically, I personally know many of the doctors in IDSA leadership positions. Many of my old bosses are past presidents and committee members of the IDSA. Before moving to Ireland I never paid much attention to ILADS, because I never found the need to look for more information on this disease. There is a huge body of knowledge on these other infectious diseases that is coming out of the IDSA and I found it very helpful. The IDSA had provided me with the accurate and up-to-date knowledge on other severe infectious diseases, such as HIV, Hepatitis and Tuberculosis, so I assumed they would also provide that same quality of information about Lyme and co-infections. However, further inspection of their documents on Lyme and co-infections ﬁnd a very selective choice of studies, and not a comprehensive view of the subject. I would even say that when it comes to Lyme and co-infections, there is just a very limited – I would say “censored” – kind of opinion. I don’t even think there is a broad understanding of Infectious Diseases doctors on the literature about Lyme and co-infections. So I found out I actually had to also become member of ILADS, because they have made an effort to really study these tick borne diseases more intensively and look at the scientiﬁc literature on the subject to support their claims that a. antibody testing is imperfect (which we all know is the case) and that b. the current recommended treatments by the IDSA are too limited and fail many patients. Very few IDSA members have the experience of treating Lyme patients in the same numbers and often with the same complexity when compared to ILADS members. So I’ve found it very helpful to learn from the ILADS doctors and to bring my knowledge up to speed and also learn about chronic Lyme. As a regular ID specialist in a public hospital you might see a few chronic Lyme patients a year. But if you are specialised in chronic Lyme, you may see hundreds or thousands of patients. You do learn from your patients, and the more you see of a certain patient group, the more you can understanding the commonalities that these patients present with. Ofﬁcially almost everybody follows the IDSA Guidelines, but increasingly many of my ID colleagues have started referring their patients, often at the insistence of the patients, when they see the treatment fails them or when they want a second opinion or another type of test. They are starting to understand that they may be missing a lot of infected patients, because of the rigidity in testing policies; and sometimes they reconsider their opinion when they see that patients are getting better because of longer antibiotic treatments and combination antibiotic treatments. With an infection such as Lyme that one cannot culture in most clinical settings, meaning there is no ‘before and after’ measurement, clinical treatment results are the best indication of the infection being cured. If the symptoms return when you stop treatment,
you probably need to treat a bit longer. However doctors are afraid to treat for longer for Lyme. If it is a prostatitis, there is no issue with treating longer, but if it is a life affecting condition. Doctors are afraid to treat longer, as the IDSA guidelines say 2 to 3 weeks. And after that, it must be post infectious, even if the patient is not better. And does not get better until antibiotics are restarted and continued for a longer period of time. So who made this law that forbids doctors to treat for longer, especially when patients are getting better with the recommended treatment? Guidelines are suggestions for protocols to follow, and patients must be individually treated, as patient centred medicine is critical to all infectious diseases. Puzzling This paradox with Lyme is puzzling to me. Back in the days when we had HIV AIDS, in 1981 before we knew it was HIV AIDS as we didn’t have an antibody test until 1984 and we couldn’t culture the virus until 1987, when we saw that something was wrong with a patient, we stood up for them. We performed evaluations of gay men in New York and we knew they were immuno-compromised and that they were infected with all these opportunistic infections. We knew there had to be something we missed and we kept looking until we found it. It took a lot of hard work, science, resources and thinking ‘outside of the box’ to come up with the right diagnostics tests and later with medication which has changed the course of history with regards to HIV and AIDS. We have done the same, put energy and initiative into the evaluation, understanding and ultimately optimal treatment for Syphilis, Tuberculosis, HIV AIDS and Hepatitis, among other diseases. Why we don’t do it for Lyme and co-infections, which are affecting an awful lot of people in a tragic way, is a mystery to me. The notion that many governments (e.g. Australia, Norway, France and many other European countries including the Netherlands) are suddenly repeating the 2016 publications by some IDSA doctors and CDC authors, is ridiculous. These guidelines are outdated and not evidence based in my opinion. We are sticking to the old traditional view even when the data and the patients in front of us do not ﬁt into the ‘guidelines’. Following the analogy of other spirochetal infections such as Syphilis, everybody knows that in the acute stage the blood tests are relatively reliable, but may be negative during the ‘window period. But in later stages the syphilis antibody titres go down and may often go negative. Why we don’t use such same wisdom with Lyme – another spirochete – puzzles me. So how are these antibody tests supposed to perform optimally, when used in chronic patients who are immuno-compromised? We all know these infections go into the immune cells of the human body. They cause inﬂammatory and auto-immune responses, so there should be no surprise that these patients don’t have an optimal antibody response. We have imperfect technology, and to use a test that is not 100% sensitive in early infection, when the bacteria is circulating in the blood stream and in highest quantities. And then to say for chronic Lyme the same test must be used makes no sense. Just like with Syphilis and other infections, antibody titres decrease with treatment and also just decrease without treatment, so chronic Lyme sufferers suffer even further when standard antibody tests, never really validated in this population, are used. Chronic Lyme?
If you look at major medical microbiology and infectious disease textbooks, they state that after 4 weeks you can’t ﬁnd the Lyme bacteria anymore. Therefore Lyme is then categorised as ‘post infectious’. But I get back to the point I’ve made before: if you can’t culture it, you cannot know anything about its viability. You do not have a organism speciﬁc test (culture or PCR), that guides your ‘test of cure’. How do you say that a bacteria is killed, when you couldn’t grow and measure it in the ﬁrst place? All you have as a doctor managing the patient in the treatment partnership, is your patient’s response to treatment. If they say they are better on the treatment, you believe them. And make decisions accordingly. If they are not better, you have an option as a doctor: you can say to your patient, that their symptoms are post-infectious, to just ‘bite the bullet’ and give it time……… Or you can treat them for longer and see if they then improve. Many of such patients get better and get cured. To withhold treatment is this clinical scenario is fraught with signiﬁcant problems, breaching a doctor’s responsibility to his patient and also basic human rights legislation. We operate, as clinicians, in such a manner in all of our clinical career for other clinical conditions. I treat people with diabetic foot infections of the bone and I keep them on treatment for months – until their clinical symptoms are gone and their inﬂammatory markers go down. The textbooks don’t say how long to treat, or say treat for six weeks, at which time the infection should be eradicated. Then you wouldn’t say it’s ‘post-infectious’ after a few weeks, when the patient is still not better. So why cant we manage with the same algorithm of ‘cure of infection’ with Lyme in parallel to the way we operate with other infectious diseases, is beyond me. Especially when we see patients getting better after treating longer than the guidelines say’ and that they relapse when the treatment is stopped too soon. Relapse with a diabetic foot infection is a treatment failure, not a post-infection or a “Post Treatment Syndrome”. The guideline for Infectious Disease specialist is “continue treatment and make clinical assessment”. Of course we don’t want to treat people unnecessary, following antimicrobial stewardship guidelines. Yet we can treat acne with six months of antibiotics, but we cannot treat a severe infection like Lyme? Acne is just a cosmetic issue, while Lyme is a debilitating, life-changing disease. In the absence of ideal diagnostic tools, when you think your patients may have the disease, treat them for a reasonable duration of time and assess and reassess the treatment response. One of the rules of infectious diseases medicine is that once you stop treatment and the patient stays better, they are cured. When they get worse, the infection has returned and they have relapse of infection and need repeat treatment. My ID colleagues live by that rule with most other infections, but not with Lyme. Most of the Lyme patients I see have chronic Lyme, but I also try to see people with acute infections, which are often misdiagnosed as ringworm or a non speciﬁc rash or cellulitis.. I ﬁnd that in cases of acute infection mostly a short course of antibiotics works well. For people who have been sick for 5, 10 or 20 years this short course treatment is not enough. If their “a-typical” MS, Parkinson or ALS would have really been MS, Parkinson or ALS, they would not improve after treatment for a bacterial infection. Often these are young people, who are given diagnoses that rarely occur at a young age and who also responded
negatively to their neurological medication. That is a red ﬂag to me that someone is ‘missing the boat’. Not every case of these diseases will be Lyme, but I am sure it is being missed a lot of the time. That is wrong to miss a treatable disease: MS is a life-long disease, ALS is a death sentence, while Lyme disease is a potentially curable disease that will never relapse again, when it’s appropriately treated. And patients can go back to a normal life with full function. Bandwagons After we discovered the right test for HIV and proper treatment was developed, many scientists and doctors jumped on that bandwagon to move forward with the successes of the new treatments. But my interest started waning, as my interest is really in the early discovery and understanding of infectious diseases. So the ﬁrst part of my career I focused on HIV as it was poorly understood and very few people were working in this arena. Around 2000 I moved into the ﬁeld of Hepatitis C, because there was a huge portion in the world population suffering from it, while we did not have good drugs at that time. And it affected a very vulnerable population. The severity and impact on a large population of the world was similar to HIV. That is why, when I realised there was a very small burden of HIV in Ireland and a large burden of HCV disease, I focused on doing studies on Hepatitis C, and between 2008, where we conducted the ﬁrst clinical trials with the new drugs for HCV, we now have easy cures, and the job is done. There are lots of people who want to jump on the bandwagon when the work is done, to get involved in the implementation science, and that is also very important. But I think it was time for me to jump ‘off this bandwagon’ and look for a new poorly understood and challenging infectious disease area. What more challenging than Lyme? I initially became involved in HIV when nobody seemed to care about it, especially HIV in pregnant women. I was involved in Hepatitis C when there wasn’t a huge interest in it. So I saw Lyme as an opportunity or as a challenge. Because there are lots of unknowns, many people are severely disabled by it and I am in the position to contribute. I work at a university, I publish, I teach at a medical school. In ﬁve years from now, when we have much better diagnostics tests for Lyme, better knowledge and treatments, there will be hundreds of doctors and scientists willing to take over the work, I hope. To me this is a really exciting time to get involved in this ﬁeld, as so much good can occur if we just come together and quit the Lyme Wars. The side effect of such war is the patient suffering and being denied recognition of their disease and their symptoms. The most exciting part is to see your patients get better! And to see them being validated that there is really something wrong with them, as they have so many rejections from the medical community. It’s just amazing; you have these patients who have seen multiple specialists with their very complex conditions. They have previously run marathons, and now can barely walk because of chronic pain and they are told that they are “seeking pain killers”. But actually they are in pain because they have an inﬂammation in their brain and inﬂammation in their joints, which is not being picked up on ‘standard testing’. So all of a sudden these high performing people are considered to be crazy. Most are frustrated because their previously successful life in society is over and it’s hard for them to lie down and just give up, because nobody can ﬁgure out their problem. I say that if all
the tests are negative and the patient is sick, the answer is not « there is nothing wrong with them ». The problem is we are not doing the right test or we have not yet developed the right test. They get labeled wrongly, because the specialists and GP’s get tired of them. I love to see these patients, who weren’t willing to lay down and roll over. And to accept the opinion of their consultations. They are the ones who are thinking out of the box; and not the doctors that are supposed to take care of them. These patients come up with ideas and answers, seeking out people that would help them and many of them get better. As a result of this persistence and refusal to ‘throw in the towel’. For me as a physician, most of these patients are very satisfying to work with. I have never seen such pro-activeness by such patients in any other disease area and it amazes me. They are stubbornly pursuing wellness against the negative opinions of the medical profession, who should really be accepting their condition and not writing them off. That is the current paradox: we, the medical profession, often treat patients with suspected Lyme and Co-infections without dignity and respect, and discount their symptoms when they do not ﬁt into our traditional ‘medical tick box’. 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? Uphill battle 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 ‘nontraditional’ 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 immunesystem, 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. WHO 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. The puzzle 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 one that truly has a right to be angry, I believe, is the patients who has been wrongly diagnosed, and does 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