Welcome this is a webinar that we’re doing on um an international clinical perspective on what we call Lyme disease although it’s called many things in many places and in different points in history it was called many things uh I’m a psychiatrist in New Jersey and I became interested in this because I kept

Seeing the late stage cases and it seems when there’s a failure in our health care System these people often refer to psychiatrist sometimes they’re told it’s all in your head it’s psychosomatic or other reasons and I kept seeing more and more of these patients so it forced me to try

To understand this better and it opened up a lot of questions that still remain unanswered and my co-moderator is Dr Greenberg and do you want to introduce yourself that okay I’m Dr rosley Greenberg and thank you Dr bransfield by the way um and I’m a Child and Adolescent

Psychiatrist and I work with a lot of youngsters that have infection related psychiatric issues and the one thing Dr bransfield and I and our colleague Dr Mal we just wrote a paper on microbes and mental illness and it’s very clear that a significant amount of mental illness is probably related to in infectious

Causes uh and that’s especially true in the area of lime lime disease um as Dr Brans Spiel said it has many names but and other tick born infections uh in the United States almost half a million new cases of long L disease are diagnosed Che but it’s not just an American

Problem one study found that 14% of the world’s population is zero positive for lime the lime bacteria now that doesn’t mean they have the infection as we know but that does mean exposure which makes this a very important issue worldwide and it’s an issue I think we all want to collaborate about because

There’s so much more we need to know diagnostically and therapeutically and hopefully um this is the beginning of that dialogue so now this is a dialogue on an international perspective so what we particularly look for were experts that had an international perspective that had experience in working with patients from different countries and

Particularly had extensive experience with with the long-term responsibility of caring for these patients and we felt that those would be the experts who would truly understand this being on the front line so let’s go around and maybe each of you could introduce yourself and describe a little bit about your

Practice we could start with CEO I think has been working with infectious disease since the age of six was that correct when you worked in your father’s lab that’s correct you’ve been doing it since yes I started with uh feeding the animals with specifically sugar magnesium and glutamate then I was

Allowed to take their temperature that was shooting up after those field and then had to spleno them which made for me a surge because to spize a rat and a guinea pig is not that difficult but a chimpanzee was difficult and then I became a surgeon and to finish my

Surgery the law in that was in my Belgian country was or to go to Switzerland or to South Africa I came to South Africa ticket going back in I State not because of the politic rather because of the weather and having children was difficult to carry on with

Uh surgery so I went to my first love and knowledge of medicine which was chronic infe diseases and uh we with the help of my father we open a big lab here on uh chronic infectious diseases meaning lamb uh Ria micoplasma clamidia toxoplasmosis um brucelosis Bia

Bonella Les babesia I see that a lot of people are talking about babesia now uh according to my father babia would kill you or would would be killed by you babesia is always with a big anemia present with a big anemia and imua which now we

Don’t so I don’t know if you’ve been positive for Bia you’ll be always positive if you been positive for any G you stay positive so I don’t know chronic Bia I don’t I don’t I that we can go into that more now your father was quite famous as in fact disas doctor

In Africa and you grew up working with him and and Nobel Prize laurates visiting him and working with him and so you had quite a background in working in that arena in in South Africa and those other countries as I understand well no it was in it was in Congo and after that

Age of six we went to Paris where he joined the pastor Institute and then um five years later he opened the tropical Institute in an okay all right now and then um Dr Lambert you’re you’re in uh Dublin and Ireland you’re and you have quite a background too in fact I think

You have some background in Africa and you’ve seen a large number of patients correct right so so I’m an infectious disease expert and my training was well I’m Scottish born uh living in Dublin but I did most of my trading in America and I spent um a bit of time in Haiti

I had research projects in Africa uh Brazil um Caribbean um India so so re mostly related to HIV because when I joined infectious diseases HIV was a major disease um but subsequently um I spent the last 18 years in Dublin Ireland uh with intent to return to Scotland

Someday and I see all infectious disease so I work in the public hospital I have a public Clinic I see and I started seeing private patients uh with tickborne infections just in the last seven or eight years in Ireland because nobody else was um but my scope of

Practice is everything from covid long covid tuberculosis schistosomiasis toxoplasmosis so I do all infectious diseases but I think the most challenging part of my practice really is is that the challenges of tickborne infections chronic infections with lime and also now long co uh huge challenges and huge populations out there uh with

Very little support and treatment which is a challenge okay now Dr jemc you you uh you’ve seen large number of patients and you see you’ve seen a fair International population working in Washington DC some of the diplomats and people that come to you what’s your experience my experience is that um I’m

A good Little American boy I’ve stayed within the the shores of America no such Adventures for me however I I did was exposed to some excellent um uh Educators as I grew up um George Jackson Georgie Jackson who was one of the founders of the idsa and was

The the chairman for the um a journal of infectious diseases um I knew him in Medical School uh I knew various people in my residency and then I got a fellowship at Baylor in a at Texas Medical Center in Houston and um I was just totally convinced that

This was the most marvelous area to be in and prior of that time they’ve been smatterings of HIV here and there you know what what was this illness that was coming about I settled down in um in um North Carolina after I finished my fellowship um and

Ended up seeing the first case of HIV what was to be known as HIV um and U 1983 and after that I became obsessed with doing HIV in fact my partners were always uh chastising me about you know all you do is HIV this whole room looks

Like HIV it looks and I just tell him to go to hell leave me alone but um so um and it went on from there and I got involved in multiple clinical trials um learned a complex illness and became um very much more devoted to it

But I must say uh and I don’t know if anyone shares these feelings after having started when I did um after The Killing Fields came in the early 90s in the US uh I was exhausted I was mentally exhaust exhausted and um I didn’t know if I

Could do it much longer I’ve been doing it 12 years up you know lots of nights you know seeing very sick people very um disenfranchised um individuals for the most part and uh not much help from my fellow Physicians uh in the area and in fact a

Lot of disdain for what I was doing and um I was um I was thought as U you know a l strange people didn’t want to associate with me because I was taking care of patients with HIV uh so I ended up setting up a smaller Clinic um in around 2000 was

Supposed to be an HIV Clinic and one day uh a young lady walked in and said do you treat uh Lyme disease I didn’t I said well of course I treat L because you know when you get out of school and you’ve been out for a

Few years you’re really cocky and uh you think you know everything and of course you think you do but you don’t and one of my precepts is um you know let’s get the nobility of medicine back and that means by working and by being humble and learning you know because medicine is

Learned through patient interaction and um I I believe very strongly in that and I’ve seen the deterioration of American Medicine to the point that we’re just um you know we’re puppet we’re puppets on the string held by hospitals and insurance companies and we have we’re very

Confined in what we can do and I think uh as I got into lime disease I learned that I was an idiot because I had said that those things I got into and I thought oh my God and and so the internet had just come around and the word got

Out that there was an infectious disease Doctor North of Charlotte who was seeing patients with Lyme disease and then our our f phone lines blew up um and people would come in I said where are you coming from I said we’re in HIV Clinic and they would say well we

Heard you treat Lyme disease and I was going crazy because I didn’t understand the internet and you know what it could do and and any rate one thing led to another and after a year or so I I became enamored with the illness because having done uh HIV medicine for 23

Years and work very hard at it I um uh I knew these people were sick there’s no room for hypochondriasis in our patient population they just don’t have it or if they do it’s it’s few and far between so I got on the I I started um

Doing my own evaluation and one thing led to another and um I’ve ended up following and seen over 15,000 patients in the last 20 plus years I’m now in Washington DC um I’m a four blocks from Uncle Joe Biden down the street and um we’re very happy here we have staff

Of 20 we see about 40 new patients a month and soal 100 patients follow follow up on several hundred patients a month and I’m very interested in U you know continuing my uh career and doing exactly this I I see this as um uh very very exciting and very challenging

Not only from a social but a political and medical community point of view so I’m looking forward to working with my colleagues in France Germany and Ireland I Know Jack Lambert but I haven’t met Cecil I I don’t know um um I don’t know Miss Dr Christian as well so

Um yeah so here I am and um we’re I have a in my practice I have a a research personnel and I’ve given them a challenge to let’s do some clinical Tri let’s do some clinical case reports at the very least because um like some of you I’ve been

Battered by the medical board system do you know this one yes I’m I familiar with that yes Frenchman yes Luke that was the Discover the Nobel Prize for um HIV and he used to visit you in Africa right he used to visit me a lot yeah yes

That was my husband that was in yeah so we I was working with crony met and Lan two French groups um on chronic infectious diseases and he was the boss of it okay but he’s not there anymore but a lot of us have that background

Anything more you want to say Joe and I want to get to carsten no okay thank you okay uh Dr carsten Nicholas why don’t you give your background and you’re the mdphd in the group here with a Immunology background and you’ve had a experience running a

Big program in Europe where you saw a lot of people in your Augsburg Clinic that I once visited okay oh that that’s correct first of all Rosie and Bob thanks for inviting me to the webinar tonight I’m very excited to be present and um to give you some um a bit um

About my background so my name is Dr Caron Nicholas I’m a German doctor I was trained in the south of Germany uh first in Regensburg later on in Munich where I became very interested in research specifically focused on transplant imun Immunology um this I did in parallel to

My medical training for at least six years um later on I did my PhD in Immunology um so um uh uh I worked in several hospitals in the south of Germany in Munich and in oxburg which was at that time one of the biggest clinics in in Germany with more than

3,000 BS um so um after a couple of years I got fed up working in a clinic and I decided uh to make something different and um I opened my first practice a family practice after being trained in surgery um uh um Internal Medicine Pediatrics and I was never

Aware that I lived my uh my entire life in high endemic areas in Germany and I have to say uh during my medical training and also afterwards until 1990 I have never had any contact with with lime or with one of its core in infection um that happened more um uh

Randomly when I open my practice um as I said in one of the highest endemic areas so and right from the first week after opening U the practice um I I had to deal with lime patients um so it was quite challenging because there was not

Much where I could rely on um uh so in those early days and I always tried to do my very best and uh seeing more and more patient over the years in the 90s so I’ve noticed um that none of my colleagues in the surrounding had any

Interest and um so um but um as I said it was very challenging to learn more and uh to find um good solutions for my patients and um probably I’m one of the Pioneers in Germany there probably not more than 10 doctors focus on Lyme disease that had changed a

Lot so learning by doing um at the at the beginning was more empirically um later on um so from the mid of the ’90s uh first organized conference that had happened in Germany so Munich when I first met uh some International colleagues specifically from the US um

Uh with some more options to learn a bit and I became fascinated and passionate for that medical field which I’m now uh in for 34 years I’ve treated round about 28,000 patient from over 80 countries worldwide and in 2006 um uh I decided to open the first clinic for tick born

Diseases and its co- infection in oxburg um uh which became right from the beginning a very successful um uh thing um so we have treated nearly 30,000 patients in that clinic uh unfortunately the clinic had to close um in the pandemic based on the Travel restriction

And the complete lockdown um and it was quite challenging um to have a staff with over or with nearly 50 people without seeing any patients anymore but I’m still focused and um the U the clinic in oxburg was unique in that way that Under One Roof um uh we had

Everything so um uh starting with diagnostic uh we had our routine lab specialized in all diagnostic uh tools which um are available to diagnose infectious diseases um we had the normal consultation uh in a practice uh we had a day Clinic to take care more intensively for patient we had our own

Rehab center because in Germany um the the most common strain is not Balia borre it’s Balia garini um and some other strains causing serious forms of neurological issues so uh I became very interested even to develop programs uh Rehabilitation programs with best um uh uh fists and other uh other uh Specialists

Um to to get the best rehab for these very serious ill neurological patients so some of them um uh as of now have presented um pictures like Ms ALS and so on or sitting in wheelchairs with serious forms of paresis and this is where we became very specific in uh with

Some delay a couple of years later we um introduced also our own research center um very much focused on development on new types of Diagnostic and I was lucky to get U twice a very big funding with other researchers um from other parts of Europe to develop um new uh test systems

Uh the funding was from the European commission and um we we were very proud about that uh because we finished successfully um and yeah I’m still in the field I’m not seeing anymore so much patient so I’m I see it at the moment more important uh to train doctors um

All over the world in that field um and this is what I’m actually doing most of the time I’m living in uh in here in London um but um I’m still seeing and treating patient and that is um I’m doing most of the time out of Germany we

Are still running a practice thanks okay now if you look at it we’re thinking of three emerging diseases we see uh or emerging awareness we see lime tickborne disease we see covid and with we’ve seen HIV and um but also there are three conditions with global impact and there may be Regional

Differences like particularly tickborne disease there’s certain strains in one area but not in another area different patterns and then there’s different Health Care Systems how would you compare are the patients all that different from different countries or is it more the Health Care Systems are different where some Health Care Systems in different

Countries U are easier to navigate than others are some healthcare system I don’t know if that went through but are some Health Care Systems in different countries easier to deal with than others any thoughts on that from any of you uh yes but it’s not really the healthare is the knowledge of the

Doctors the education of the doctors the doctors are not aware of those things they rather treat the end product than the root so when you come with multiple hes they’ve got a treatment with her arthritis they’ve got a treatment with um epilepsy they’ve got a treatment they don’t see where it comes

From they they don’t want to go and see there they stay on the top on the results and they’ve got medicine for everything and uh they try to stabilize the end product rather to stop it to stop its uh development and that’s why it doesn’t work yeah you’re absolutely right but um

You know coming back to the questions I guess there are definitely some countries where it’s very hard as a patient or as a doctor to deal with P to to treat lime um so I can only talk best here uh about the condition in Europe um

So uh from a patient perspective I guess uh the hardest places to live are uh in in Scandinavia or in the UK there are many other countries where it’s much easier now to get access to to good treatment um I have to say um regarding the um Health Care Systems

There are also huge differences um so in some countries uh pibor diseases are definitely better accepted and noticed than in other countries and um here I can specifically speak for Germany so uh Rosal mentioned at the beginning in her introduction so uh in the US we have

Actually round about half a million new patients so um the the newest numbers from 2022 in Germany Germany had officially reported 320,000 uh new infections with lime uh which had been treated by German doctors so this are not the statistics of the um of the health um uh uh Department this

Are based on uh on data from all public Insurance uh companies by the way so um so uh German has Germany has also acknowledged that there’s an ongoing problem that does not mean that everyone is getting uh a treatment um what we um uh think is the best so dealing since a

Long time with these complex illnesses but um there’s definitely um a much better focus in some of the countries than in others in the UK I guess there’s a is there a difference in Scotland Ireland versus England in how it’s dealt with or is it the same throughout the UK well I I

Think well first thing I can speak for Scotland England Wales Northern Ireland because I treat people from all four of those countries they come to see me in Dublin or I run a clinic in Edinborough Scotland um and the challenge is is that Scotland you know if you put Scotland

England Wales Northern Island together you’ve got 60 70 million people and they report maybe a thousand cases a year and you look at the German statistics with a similar population and you’re dealing with 300,000 and if you look at France over 70,000 similar population and and I

Think the chall issue is is nobody’s keeping track of how much lime cases there are in the UK and Ireland there there is no reporting and it’s very it’s very disproportionate to have a thousand cases when we have very similar populations probably similar tick burdens

In UK and the rest of Europe um but there’s huge Under reporting and I do agree it gets back to the very simple concept is if there’s a very traditional view of lme disease easy to diagnose easy to treat the the testing is perfect and two weeks of antibiotics in Ireland

Is all they recommend as part of treatment um in UK they’re more liberal they they’ll give three weeks of antibiotics for suspected lime with the option to do an additional three weeks but but still education of GPS they have very little knowledge about Lyme disease um many cases are being missed you know

The the challenges are are are are pretty huge you know there there’s a huge lack of Education there’s a huge lack of recognition of the disease there’s a huge lack of collecting data on cases in the UK and Ireland and there’s a huge downplaying of the

Severity of Lyme disease so so we’re in very it’s very difficult for patients and that’s why patients leave the you know UK and Ireland and they go to places in Europe or places in America where they’ll get appropriate treatment okay so it’s it’s in Asia it’s in South America it’s it’s in Europe

It’s in America it’s everywhere yes but then we should go back to the discussion that we had yesterday what is lamb disease why do we call it lamb disease right now historically the the theory is it began in Lime Connecticut but you you it seems that’s not correct okay you had some

Historical research you did what and and it didn’t begin in America so it was recognized first where in Africa or France uh it just well the old uh case that we have is uh over 5,300 years old it was found in ales uh it was a mommy called oy and a

Brain was full of boria B then if we look at the history we find uh in 1702 dry D described uh bosis in central Africa then in 1900 it was described in Spain in 1907 Borel Amed Borel um found it in France in 1920 charl nikol Nobel Prize of

Medicine found it in Tunisia in Congo 1933 shells describe it in Congo uh let’s go to Capon where pacov spoke about it in 1944 Kenya hes uh described the disease in 1950 as a relapsing fever then the same thing uh enen Sparro in Ethiopia in 1950 was also talking about the rapsing

Fever and then only in 1975 it was uh described in Connecticut changing the Bia into lamb which was actually a um village in conut so lamb is a village lamb is actually not a disease but now it becomes lamb and Co which is not an excuse because uh it

Will blind the research for other uh infectious diseases so when you find lamb when you find a patient that’s sick and has no lamb in America I’ve seen it a lot they’re called lamb Ser negative no they’ve got something else and Co is not strong enough to balance L away for

Me but that’s big big even in America it wasn’t first discovered in Lime it was discovered in Milwaukee it was written up in Milwaukee uh th myologist yeah 1970 py yeah so it’s uh it just the name n stuck because people recognized it what what’s what’s a better name for it

Although it’s it’s hard different people call it different things and um I don’t know what a good name is and it’s that you you have plenty different names floating around yeah my suggestion would be uh to involve all the obligated intracellular organism so those uh the the L soal the

Bosis the Ria micoplasma clamidia um intracellular organism so they have to live in the otal and then in the cell tissue so I would say that obligated intracellular organism o IO is a good name the problem with lamb disease here in South Africa the doctors think that

It doesn’t exist if you didn’t go to America and and in many countries not only here well in America it depends on what state you’ve been to uh what state you come from and where you traveled uh there are certain states that they don’t you know have it and that’s just not

Yeah as I said it’s it has been discovered all along throughout uh centuries not only in America I think everywhere but Antarctica as I remember it it has been discovered there it think maybe near The Straits of bransfield okay but it it’s almost followed the course like um Psychiatry where I’m

Looking for my old copy of DSM and that was the original classification of mental disorders and it used to be really three things schizophrenia uh psychon neurosis and organic brain syndrome and then uh with time it got expanded and now we have the DSM so there’s always a categorization

That keeps expanding and lumpers and Splitters and it’s hard when we talk about different things so we probably need a better organized way of nomenclature that’s based on how people think but I think if you see it as a simple um it can impact how you see it

So you could look also at the clinical presentation so it is presented sometimes as you you have to have a a tick that stays there for 24 hours or longer you have to have a Bai rash and it’s uh arthritic and um which is what what’s the scope of it what’s the true

Scope of this disease how would you describe it uh the the the gemm as I said yesterday will not give you its name but the name of its position in the body so it does change one day it’s more uh neurological the other day it will be

Rological then it will attack the heart it will be digestive it will be all over the place you can’t put it in one sector it’s not one organ that’s affected it’s all of them together or one after the other one or mainly in the scar tissue it’s also determined by

Genes uh uh it’s the symptoms varies that’s what the complication complicated disease it’s a vascular disease and the V you got vessel from top to toe and they they live in the blood vessel there are um they travel through the blood vessels and they go everywhere and they stay

There more and they more and they more when they’re there you develop epilepsy when they’re somewhere else you develop psychiatric and it’s a toxins of those germs that uh give you the symptoms anywhere in your body well that’s I think why they say it’s the new great

Imitator kind of like syphilis was the original great imitator because you can see anything like it and I suspect you all have seen various manifestations of every system but I think one of one of the things that pointed out by calling it lme disease you kind of say you have to be

An old lime Connecticut you know you don’t really describe the organism you don’t really describe the manifestation of the organism and you know 10 years ago when I started managing lime patients we didn’t think about co-infections much and now all of a sudden it’s become we’ve tried to change

It from lame disease to talk about tickborne infections because it really is multiple infections um that are maybe triggered by lime I’m still lime is still an important pathogen in all of this but there’s many other reactivation infections that occur co-infections occur at the same time as the tick bite

Um so I just think we we’re in a better place now at least in some in in Lime literate groups were really recognizing the co-infections to be very important not just lime but if you go back to the Trad traditional people um in the UK you

Know you have to beg to a lime test people you know the GPS will say there is no lime there are no ticks the the Consultants will refuse to do lime tests and they won’t even consider doing you know anaplasma rsia you can’t get those tests done and I actually had a recent

Patient had come over to see me from the UK in Ireland and they had a bullseye rash joint pain classic symptoms but their B Bari antibody test was negative and they were refused treatment they came to see me and I repeated the test and I did anaplasma as well and he was

Anaplasma positive and it was the test that was done for anaplasma was from a UK accredited Public Health laboratory so you couldn’t deny the value of the test so he obviously had a tick board infection he had bellia plus anaplasma I treated him he got better and I gave him

A copy of his anaplasma uh report and said take that back to the consultant in the UK ask them where anaplasma came from and now does he believe that he had a tickborne infection that Bullseye rash was bellia so I just think you know we’ve we’ve got

A long way to come go um in countries like the UK and Ireland there’s a total denial of liy Malone and no recognition of tickborne infections you know co- infections but but I think we’re we’re better off than we were many years ago um there is recognition in some

Countries and it kind of gives hope that you know things will improve in the UK and Ireland uh because you know you other countries in Europe are doing a better job America is now doing a better job I think as a rule in keeping track of the epidemiology and maybe be more

Understanding of chronic symptoms related to Lyme so I just think you know I think you know we this is a huge challenge for us as clinicians but it’s even more of a challenge for the patients who are not listened to and not treated appropriately I I think one bias was

When it was first researched early researchers were more predominantly rheumatologist y so they categorized it with what they understood and it was then categorized more as an arthritic disease rather than viewing it as a multistem disease where doctors with that training were less likely to

Look for the the py symptom or the that were outside their area of understanding yeah we have also to be careful to call them only tick born diseases or there a huge number of other vectors um which can lead to transmission and um um you know um only

Some certain um infectious diseases out of that group um needs um a tick for transmission uh many of them can be transmitted by normal mosquitoes by horse flies by sandflies uh by mites by lices and so on and um so probably Vector born diseases would be the better

Term yeah but Vector born diseases isn’t explaining all the complexity um of these uh infections causing so much trouble in uh in many organ systems like to make the comment that um tickborne illness what you want to call it tickborne diseases lime broses complex we’re sort of like The Unwanted

Stepchild in the medical world where chronic illness is not appreciated where it’s it’s dispensed out of hand um and it’s trivialized um I’d like to point out something every everyone already knows and that um of the 20 20 top non-pulmonary non-cardiology chronic illnesses we only

Know the ideology of two one is HIV and one is H bori we don’t know the cause after how many decades of neurod degenerative disorders rheumatologic disorders uh neuros psychiatric disorders and all of these things are increasing in great quantity there’s too many cases of ALS in the US I don’t know

About the world there’s too many cases of Ms it’s gone wild there’s much too much rheumatoid arthritis so I think we’re dealing with a chronic inflammatory state with oxidative stress which actually depletes uh key accelator functions and energy of course and in the right um genetic um setting this

Sort of chronic oxidative stress will help um the illness whether you call it rheumatoid or whether it’s the ALS or what help it to emerge so there’s no question there’s genetic U heterogenity here and what’s there’s nothing to compare to the chronic I mean 247 inflammatory process that goes on in

These individuals unless you’re dying with AIDS which very few people or you’re dying with cancer and those people die are people with L brosis complex they want to die but they can’t die and I’ve heard that many times and of course the leading cause the last time I checked of death was

Suicide and it’s it’s a scandal for our societies around the world to not recognize this uh and I think we had the discussion that we’re all puppets for the insurance companies and I can’t speak for all the other countries but we definitely here we’re puppets and uh if

You don’t confirm then you’re singled out and you’re criticized and that’s been a lot of my career I’ve been in and out of medical boards I’ve spent so much money and but I hung in there and so because I believe in in what I’m doing and also it you you get affirmation

Every single day when you come to the clinic because people say thank you for what you’re doing keep on doing it I know your whole story and um we’re proud of you and we really really appreciate you so that to me as a doctor if if you

Can get more than one patient two patients a week three patients a week come to you and say that that’s like that’s like and you know what other profession offers that opportunity if you’ve done the right thing and try and and definitely help people albe it in a

Unconventional way if you will unconven from what unconventional from mainstream medicine it’s not unconventional it’s listening to the patient using your medical skills and background and experience and applying um paliative treatment and then hopefully definitive treatment to get this patient um in good health which may take two to three to

Four years but it can happen did does there what do other people feel classical it’s a classical approach it’s that unconventional yes it is I know I’m just I’m using their language SEL using their language is so what other what’s the leading cause of death and other the I I

Feel it’s suicide but I’m the psychiatrist so I see more of those patients but is there any other feeling about what the leading cause of death is yes there’s cancer uh because a infected cell will be cloned has the same speed than a normal cell that gives cancer uh there’s also heart

Attack uh there’s uh I think heart attack and cancer the main thing that kills uh yes cancer anywhere cancer in the brain cancer digestive cancer in the lungs and also the bilia that I was talking before takes a lot of important in that uh in those diagnosis totally ignored everywhere in

The world and it’s growing and growing with migrants you find it everywhere I’ve got I had a clinic in Germany in Denmark and in Belgium and when I go there recently um it was this this year yeah I find so many people with Bila positive and they never been anywhere else than in

Europe Andia mimics the cancer totally it looks like a cancer you know I was thinking about though that issue of transmission we’ve talked about you know vectors but what about human transmission I mean what do people think about congenital sick born illness or um you know of

Course to the placenta of course but I was thinking of something that we were talking about uh where is it how did it become contagious well myself had a big experience I broke my neck and had three graft of Bones of donors and after that

I develop the whole uh the whole type of disease like rum micoplasma clamidia lamb disease and all that and it was in The graft because the graft are um kept in freeze so the germs are still alive in there and uh when when we talking yesterday about

Blood transfusion it can be but organ uh transplant that’s definite nobody look before you do a transplant if that organ is infected or not only for certain infectious diseases not for all of them unfortunately that’s right you coming to your question so I guess uh without um the typical um

Transmission where insect bites are sticking uh we have definitely to consider that there are other ways of transmission as well so I personally do not see any big problem regarding sexual transmission so um we have done a trial um after we got notice of Dr Stricker’s study long time ago in San Francisco

Based only on a on a few couples uh we did the same in my former Clinic as a multicenter studies with other um uh clinics all over Europe and um in round about 80 couples we haven’t found any evidence so I personal believe um so I can’t rule out that there’s sexual

Transmission but um I personally see that as a very uh low risk at the moment um so and we can’t rely on these um couple of case studies is so in one case study they have found in male seen evidence of bellia bacterias or speds and out of vaginal lesions as well but

Um now to um transfer that generally that there’s a higher risk and I guess um I can’t confirm this from my perspective i’ just like to comment on that in that um when I was doing HIV AIDS um there was some data that generated over the years of course that said that

Um if you have a gay couple with one patient infected the other not infected that the transmission rate was three plus per it was and um over the years but the incidence of sexual um involvement was much greater for the gay population in general but if you looked at heter

Seexual couple one of whom was um infected um they could have intercourse 100 times over a year um and remain negative most of the time until they’re not negative and so if we have frequent encounters with Ira nids or we have frequent sexual encounters I still think uh carsten that it’s possible and

Certainly certainly I I think it’s you know and people ask me in the awkward question about okay when can I have sex and you know am I danger to my husband am I danger I said I don’t know I mean nobody knows these answers it can depend

On the stage of the illness I think Dr Lambert probably has an opinion with congenital also breast milk what yeah and I I think i’ i’ just like to say that the issue of congenital lme the transmission of lime in pregnancy has been really downplayed even even to the wording you

Know icd1 doesn’t include congenital lime um lime is listed in most kind of websites as possible in pregnancy there is a possibility could transfer but they don’t come down and say it does transfer and they don’t do any studies to say how commonly does it transfer we don’t know these

Questions but can lime transfer in pregnancy absolutely if you look at the literature there’s hundreds and hundreds of articles but when you look at recent Publications in the medical literature they kind of Select 15 articles that say it doesn’t transmit they cherry pick so there’s a huge bias I think in the

Medical literature against the concept that lime transmits and pregnancy even though there’s there’s abundance of data and we’ve actually published you know in Dublin here reviews on this subject look looking at the literature and there’s clear evidence that Lyme transmits in pregnancy we don’t know how commonly we

Don’t know how commonly it transmits sexually either because it’s even more difficult to do studies you know on transmission that’s horizontal than transmission that’s vertical if we could do studies in pregnancy with lime we would actually answer the question but we can’t do those prospective studies because there’s still no acknowledgment

In most you know guidelines most articles are published that that is even a possibility it’s not even a possibility it’s it actually is happening what we don’t know is how commonly because we don’t have the science behind us it’s not uncommon for me to see a child uh who presents with

Psychiatric issues and I discovered they have tickborne infections to then wind up diagnosing the parent one of the parents with having tick for infections uh and it’s very clear in those cases but also there is there are a few studies out that seem to show that this is true for can happen

With co- infections and I think that’s really important for us to keep in mind I know there’s one talking about the congenital transmission of babesia and I’ve seen another one talking about that with Bartonella so uh there is so much that we don’t know that are probably are

Affecting these kids I had one family I followed it was four generations of trans mission of Lyme disease with associated with autism as a manifestation yeah if you go to the publication of the 80s uh with the group of my father and Charlie Con on that

It’s clearly uh published that a lot of uh um miscarriage and all those things are due to Reta uh there’s lots of publication about that but they forgotten the TR yeah in those days it was common to believe that now it’s like we we ReDiscover it no it’s known for 20 40

Years it’s not new I’ve got all that literature it’s mainly in French but uh there’s a lot of I don’t know if you know about Clinic the park so it was a a meeting for French English people once a year and they would all say that every year so it was

Not something special it was accepted well in my practice in DC we have hundreds of families that have been involved um either one or most parents um and family of three perhaps or family of three children maybe two are infected and they’re worried about the third one

AB we see this and and Rosy you know this to be true I mean you you see it even up more closely than we do but we see it I have a pediatric nurse practitioner who will see and and I always tell her I say I feel sorry for

You because you’re treating a a difficult patient the child who isn’t interest in being there usually and you’re also treating both patient both parents no it’s very common it’s very recomend to find not one autistic child in a family but many absolutely ABS on the other hand you have also to

To take in consideration um that families are very often living in the same habitat being exposed to the same exposure to take your children to go to any outdoor activities in the woods and then everyone is exposed yeah um so I I I don’t neglect um um the U the conal U uh

Transmission so I’ve seen plenty of these cases that’s for sure but um so if we have um these histories of lime um so um over one two three four generation so probably it’s not only a matter of congenital um Transmissions or um I’ve got families of moton diseases

Uh the grandfather the Father the Son the nephew they all have the same thing but it doesn’t matter it can be treated it’s not because it’s genetic that you have to stop the treatment well a good example is we take a very thorough history as most you do

I’m sure and that includes um parents and um their siblings and their grandparents and we see we see a a a Litany of chronic illnesses which can be did bule things so okay my my father uh had um a lupus for example my mother had rumo arthritis and we had an uncle who

Was schizophrenic and we had a grandfather who had Sor psoriasis and also became dependent and the grandmother had some kind of colitis which killed her that’s the end product as I said that’s the end product caused by what I’m saying I see an association between some between these conditions

And what we consider to be whatever you want to call it okay it’s a chronic inflammatory illness with polymicrobial origin with multi systemic involvment multi compartmental neurologic involvment and it’s never stops and so as I said before I think if you’re genetically predisposed to have ulcer colitis or Crohn’s disease and by the

Way we see a lot of patients have comorbidities with crohn’s disease with rheumatoid arthritis I’ve seen them both in the same patient more than once and guess what we treat the illness and they get better we treat the illness we don’t use we’ll tolerate working with the rheumat I shouldn’t say tolerate but

We’ll work with a rheumatologist as long as the steroid level is not too high and you know we we don’t want immunosuppress no no I you have to work with them okay you C you can’t just shake your head you have to work with these people to keep

Piece and if the St you know you accept a certain amount of predone maybe 7 milligrams 8 milligrams and you try to taper it but we’ve worked with um um a whole range of uh individuals who had more more than one illness and once you treat them you know you allow them to

Take what you consider to be a only mildly um immunogenic or immune altering medication no high steroids no pulse steroids nothing like that um and you say okay let’s work with you and let’s guide you through this and let’s you know let’s see if we can get

You better and um many times we can get rid of the the rheumatoid features for the most part I saw a young man who’s in his 20s now he wants to be a sports uh athletic um specialist and um he had flection contractures of his elbows he couldn’t walk he had

Spasticity and after two or three years I just in this case I just put him on Tetra cycling for the most part doc cycling for the most part after I had treated him I know I know there’s a book called the road home and a mcferson Adams was at George

Washington University and he wrote in the80s a book home the road home and he was a chairman of Rheumatology and so he started treating his rheumatoid with tetrac cycling and it was a very slow process but they gradually got better and he’s very discreet with you know how he how

He dosed them and all that sort of thing but I think that’s just one tiny facet of the whole world of this tickborne illness and Associated diseases and I want to make the point again there’s way too much chronic illness in our world there’s way too much and I think it’s

Fueled by who knows it’s genetics it’s the environment it’s the food that we eat and um and and behavior patterns and so forth and so on so the world is changing terms of the the things we being fed and what’s happening in the environment there are thousand new chemicals put in our

Environment every year I don’t think that’s good for The Human Condition yeah but people also talk about food as medicine and it really is if you think about the microbiome and just all of the changes within the body you know one of the issues is Psych is a

Pathophysiology which which you you know alluded to Joe in terms of the immune dysfunction that causes a lot of these symptoms but it’s not as simple as that right right I mean there are a variety of different factors that come into play here because there’s a possibility of

Autoimmunity um although there could be some disagreement about that as well as direct a direct infectious process causing problems because we have seen uh evidence of brilia in um some cases of uh pathology you know uh Ral pathology and we have also Tak in consideration the Environmental influences the global warming so you

Know looking back let’s say in Europe 50 years ago we haven’t had so many ticks spread it all over Germany or in the neighbor countries so but with the global warming uh having no more Winters um so the the habitats constantly grow grow grow yeah and and you

Know yeah one comment about the uh global warming is that during the time of Louis the 14 in France there was malaria in Paris yeah now we have several cases around Frankfurt around Munich because of uh um of the warm conditions yeah so so the cycle is not 20 years 50 years

But sure and you know this is where we have this um um Big Grow of of the tick populations all over Europe and in the tick in the microbiome we have we are finding more and more different um uh um infection yeah this is one of the issues

So you know for 40 years you haven’t had any babesia in the northern part of Norway or Scandinavia so that had changed completely yeah due to the global warming and um this a huge impact um uh so definitely and not only that but the population that’s moving so fast

And all around the world that’s also a big factor you know one thing we all um are discovering I think is how much uh environmental factors like mold and fungus play a role well in the United States at least in the late 1970s they

Passed the law to get rid of uh lead in paint lead is a retardant that will slow mold growth so once they did that I think that that’s part of why we have more of a problem with mold in homes yeah but I I think the whole concept is

Lime is not simply just an infectious disease and that’s that you know especially if you catch it late and most of the patients we see we are caught late we don’t see them early because the the primary care doctors are missing the diagnosis so we’re seeing lots of late

Cases but if you actually look at these you know these late cases that we’re seeing the the the challenge is is is really that this is a complex disease it’s not just the infection it’s inflammation it’s autoimmunity the patients we see their lymphocytes are low their neutrophils are low these bacteria are imuno

Compromising these patients so it’s not a simple disease it’s not easy to treat it’s much more complex and and as clinicians who are experienced in managing the complex cases antibiotics alone don’t treat these patients you need to deal with the immune system you need to deal with the inflammation you

Need to repair the damage and this I go back to the day of HIV and AIDS back in the day of HIV and AIDS as there was no treatment the immune system get lower and lower they get more and more infections you treated that infection with antibiotics they got better but

When you stop the antibiotics they deteriorated against because antibiotics alone don’t treat an infection you need a healthy immune system you need CD4 lymphocytes cytotoxic te- cells working with the antibiotics to cure the infection and there’s a lot of similarities between HIV and AIDS and the imos supression I think and why

Patients with with lme disease don’t respond to treatment they don’t respond to antibiotics necessarily if because their immune system is deficient just like back in the day of HIV and AIDS um so I think that really is the challenge of the patients we’re seeing we’re seeing the chronic patients the misted

Patients and the treatment is more I agre molds can cause imuno supression but the problem the primary problem is you have an infectious disease you need to treat with antibiotics but you need to do all the other things to repair the immune system to deal with the inflammation to make sure the

Antibiotics work and you can achieve a cure and that takes longer course treatment and there is no recognize recognition of this in the General Medical Community I’d like to phrase complex interactive infection but it’s more than com infection there’s all the environmental pieces to it too and I one

Way to break it down is you have the infection you have the immune functioning and then you have the symptoms those three different pieces interact and you can intervene in any of those three areas or all those three areas but it is I guess a lot like HIV where these patients are imuno

Compromised in some way I think you get the infection and rather than adaptive immunity people never get adaptive immunity to Lime although maybe some people do all right but the people we see don’t and that’s why they keep getting reinfected instead of adaptive immunity they get persistent inflammation instead of temporary

Inflammation until you get adaptive immunity you get uh persistent inflammation and autoimmunity but not adaptive immunity well I just want to say I agree with Jack um as I mentioned briefly the other day we won’t treat a patient until we’ve done a full evaluation but more

Than that we need if we do decide to treat the patient and by the way having a support person is Paramount we won’t treat a patient unless they have a support person that we’ve interviewed um but the point is to reduce inflammation uh you have to put you’ll

Be putting things on a on a more even Keel if you will and I use the analogy would you rather go down the tarmac at 180 miles an hour would you rather ride the side of a mountain with no uh no Gates or no no barrier would you

Do which one do you want to take you want to stand do you want to um if you want to go fast yeah pick your pick your route

3 Comments

  1. What are your recommendations to find doctors who are willing to help treat patients here in the US? Access to testing is almost impossible and treatment is complicated after getting a positive diagnosis. We were able to get a doctor in Belgium but he no longer can come to the US so we have to find someone to work with him to help us. My husband has a strain that was only detected through a specific test in Belgium because labs here don’t do it. It’s very expensive. Me and my children had to send out our bloodwork to test for the positive tests that he has and are still waiting for results it’s ridiculous to go through this. People we know that possibly have this have no access to testing and treatments unless they go through the hell we have had to go through to finally get diagnosed. It’s wrong to not have this being taken seriously. According to our Belgian dr, he said that my husband transmitted it to me and I have birth to my children with it. He has Borrelia Miyamotoi and Babesia. He has been getting treated but I have not seen any improvements as of yet. None at all. Very discouraging

  2. 🎯 Key Takeaways for quick navigation:

    00:16 🌐 Introduction and Motivation for Lyme Disease Exploration
    – Dr. Bransfield's introduction to the webinar on Lyme disease from a clinical perspective.
    – Initial focus on late-stage cases and the challenges within the healthcare system.
    – Dr. Rosley Greenberg introduces herself, emphasizing infectious causes of mental illness, with a specific focus on Lyme disease's global impact.
    02:57 🌍 International Collaboration for Lyme Disease Understanding
    – The importance of an international perspective in understanding and treating Lyme disease.
    – Emphasis on collaborating with experts experienced in working with patients from different countries.
    – Dr. Bransfield urges dialogue and collaboration for better diagnostics and therapeutics globally.
    07:24 🇮🇪 Dr. Jack Lambert's Background and Challenges in Ireland
    – Dr. Jack Lambert shares his background, including infectious disease expertise and experience in various countries.
    – Highlights the challenges in Ireland regarding tickborne infections and the lack of support for treating Lyme disease.
    – Mentions the broad spectrum of infectious diseases he deals with, emphasizing the challenges of tickborne infections.
    13:32 🇺🇸 Dr. Joseph Jemsek's Journey and Challenges in the United States
    – Dr. Joseph Jemsek shares his journey from focusing on HIV to entering the world of Lyme disease.
    – Expresses the challenges faced, including a lack of understanding from fellow physicians and the impact on his mental exhaustion.
    – Describes the transition from an HIV clinic to treating Lyme disease and the overwhelming response from patients.
    18:13 🇩🇪 Dr. Carsten Nicolaus's Experience in Germany and Clinic Overview
    – Dr. Carsten Nicolaus provides his background, including training in transplant immunology and his entry into the Lyme disease field.
    – Describes his early challenges in treating Lyme patients in Germany.
    – Details the unique aspects of his clinic in Augsburg, focusing on diagnostics, rehabilitation, and research in tickborne diseases.
    21:38 🌏 Comparing Patients and Healthcare Systems Globally
    – Discussion on the global impact of Lyme disease, considering regional differences in strains and healthcare systems.
    – Dr. Carsten Nicolaus emphasizes the significance of doctors' knowledge and education in different regions.
    – Recognition of the lack of awareness among doctors and the need for international collaboration in Lyme disease research and treatment.
    22:24 🌍 Challenges of Lyme Treatment in Different Countries
    – Treatment focus varies in different countries; often, it stabilizes the end product rather than addressing the root cause.
    – Significant differences in healthcare systems impact the acceptance and recognition of tick-borne diseases.
    – Germany acknowledges the problem, but not everyone receives optimal treatment.
    25:09 🌏 Discrepancies in Lyme Disease Reporting in the UK
    – In the UK, there's significant underreporting of Lyme cases compared to countries with similar populations.
    – Lack of awareness, education, and recognition of Lyme disease among healthcare professionals in the UK.
    – Patients often face challenges in getting accurate diagnoses and appropriate treatments.
    27:28 🌐 Historical Perspective on Lyme Disease
    – Historical evidence suggests Lyme disease has been present globally for thousands of years.
    – It wasn't first discovered in Lyme, Connecticut; historical cases were found in Africa, Spain, France, and other regions.
    – The name "Lyme disease" has limitations, considering its global historical presence.
    32:48 🧬 Complexity and Clinical Presentation of Lyme Disease
    – Lyme disease presents with varied and changing symptoms, affecting different organs and systems.
    – It's not confined to a specific organ and can manifest neurologically, rheumatically, cardiac-wise, and more.
    – The term "tickborne diseases" might be more inclusive and accurate than just "Lyme disease."
    34:27 ⚖️ Lyme Disease as the "Great Imitator" of Chronic Illness
    – Lyme disease is referred to as the "new great imitator" due to its ability to mimic various chronic illnesses.
    – Challenges in diagnosis and understanding the chronic inflammatory state associated with Lyme.
    – Recognition of Lyme as a complex illness with a significant impact on multiple organ systems.
    39:04 📈 The Unrecognized Impact of Chronic Illnesses and Advocacy Struggles
    – Chronic inflammatory states and oxidative stress may contribute to various chronic illnesses.
    – Lack of recognition for the complexity of Lyme and associated tickborne infections in the medical community.
    – Patients often face challenges, including misdiagnoses and lack of appropriate treatment, leading to advocacy struggles.
    45:01 🦠 Disease Transmission Considerations
    – Disease transmission beyond typical insect bites,
    – Organ transplant risks due to potential infection,
    – Limited evidence on sexual transmission; low perceived risk.
    46:10 👫 Sexual Transmission Discussion
    – Limited evidence supporting sexual transmission,
    – Study involving 80 couples found no conclusive evidence,
    – Acknowledgment of the potential, but perceived as a low risk.
    48:39 🤰 Congenital Transmission of Lyme
    – Downplayed recognition of congenital transmission,
    – Existing literature indicates clear evidence of transmission in pregnancy,
    – Lack of comprehensive studies on the frequency of transmission.
    50:33 🧬 Familial Patterns and Genetic Considerations
    – Observations of familial patterns in tickborne infections,
    – Multigenerational transmission instances,
    – Emphasis on the importance of thorough familial medical history.
    53:42 🧑‍⚕️ Tickborne Infections and Neurological Manifestations
    – Association of tickborne infections with neurological issues,
    – Notable instances of tickborne infections in families,
    – Consideration of environmental factors contributing to increased tick populations.
    55:53 🌐 Environmental Factors and Chronic Illness
    – Discussion on environmental factors contributing to chronic illnesses,
    – Mention of the changing world and its impact on health,
    – Recognition of the complexity of tickborne illnesses beyond just infections.
    58:35 🍽️ Role of Diet and Microbiome
    – Acknowledgment of the impact of diet and microbiome on health,
    – Consideration of how food influences the microbiome,
    – Discussion on the role of mold and fungus in health issues.
    01:00:51 🌍 Global Warming and Spread of Tick Populations
    – Impact of global warming on the spread of tick populations,
    – Changes in habitats and tick-related infections,
    – The intersection of environmental shifts and infectious diseases.
    01:03:06 🔬 Lyme Disease as a Complex Disease
    – Comparison of Lyme disease complexity with HIV and AIDS,
    – Challenges in treating late-stage and chronic cases,
    – Emphasis on the need for a comprehensive approach beyond antibiotics.

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