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.
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’.
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.
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.
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.
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, a non-specific rash or as 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.
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’.
To be continued in part 2 “It’s the bacteria, dummy!”
Interviewer: Huib Kraaijeveld
Call to action: 'A Matter of Dignity'
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