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I don’t know about you, but I have started to hear more and more about Lyme disease, both in the press, the media and also thanks to high profile sufferers sharing their struggles. Unfortunately a major reason for this is the fact that it is a condition rampantly on the rise. Did you know however that the most impacted group per capita are children? We were lucky enough to get an audience with one of the leading experts on Lyme Mary Beth Pfeiffer who has written a fascinating book: Lyme: The First Epidemic of Climate Change. We wanted to understand more about Lyme, why it is on the rise, how you know if you/your children have been impacted and most importantly how we can protect our kids from this growing epidemic.
Click here for the full podcast on iTunes (or search ‘Better Babies’ on all major podcast providers) or read on for the highlights of our discussion:
Mary Beth, how did you first become so fascinated with Lyme?
I am an investigative reporter and live in an area with a lot of Lyme. That said, it took 30yrs of reporting in the mid-Hudson valley north of New York State (a highly affected area) to get around to looking into it. I was becoming increasingly aware that there was a problem. There were many cases, and cases where people were struggling to get a diagnosis and were remaining ill even after that. I had thought that modern medicine was diagnosing and treating it – which is why it took me so long to investigate. I quickly found out that on the whole we do not have adequate diagnosis and treatment.
Once I realised this, I learned many things that surprised me:
I learnt that is was much more widespread than I had thought, that it is growing in leaps and bounds and is global. Unfortunately I also learnt that there are many things we do not know still and many problems associated with it that remain unsolved.
Ok so let’s start with the basics: What actually is Lyme disease and where does it come from?
It is imported into humans by the bite of a hard tick. The problem is that these ticks are moving around the planet rapidly. Birds are migratory and have long picked up ticks and dropped them from one place to another. The difference now vs a few years back when Lyme was not growing so rapidly is that when that bird moves and drops it the tick now has a greater likelihood of surviving simply because we have a warmer climate. We have changed the world in many ways but fundamentally it is warmer and it is more humid, these are exactly the conditions that ticks need to survive. It really is becoming a global issue and has spread across the world including into the UK, Scandinavia, Russia and even China.
It is not just a warmer climate however:
Our modern landscapes are different now too. We have created many small forest fragments within suburban communities. We all like them and like to live among them, but, this is not the natural state and these changed landscapes support a not quite natural ecosystem. For example, there are a lot of mice in these places. The garden dormouse (found a lot in Europe) is a key driver of Lyme. When we live in close proximity to these animals, plus birds and even deer there is risk of spread. The process typically starts when that tick drops off a bird or deer. These ticks can lays around 2000 eggs. When these eggs hatch the first place these larvae go is to bite a mouse or other small mammal. These are the reservoir of infection – these are where ticks are first infected with Lyme disease and obviously can then spread into our communities.
Climate change did not create Lyme….
Lyme is not a recent phenomena, it has been silently out there for years. To give you an example there was even a 150m year old tick found encased in amber that showed the first evidence of the Lyme pathogen. It has been out there – but it has been quiet – we have set it loose because of how we have changed the world.
How much of a problem is it now? How much has this issue increased?
There is no doubt that it is growing rapidly. However in terms of case numbers it is hard to quantify. One recent paper tried to assess this and for Western Europe 232k cases per year was estimated. The issue is that the data is spotty in terms of how it is collected and shared. In the US we are a bit more unified on it. To give you an example however at this point the recent data was 43k reported cases in 2017 but the CDC says that for every case reported there is 10 more behind it (unreported) so a more realistic figure is around 400k cases. Diagnosis however remains very difficult and therein lies the issue. Detection and diagnosis of it remains tricky however and is definitely not perfect.
So given that diagnosis is not particularly accurate, how do you know if you may have an issue? What do you watch for?
Firstly people should be very vigilant when they go outside and interact with nature. The way to get bitten by an infected tick can be as simple as brushing up against a tall bit of grass or a weed. These ticks essentially wait for a mammal to pass and they will latch on. If you are bitten (and sometimes these ticks are very small and tricky to see – the size of a poppy seed). The first thing to look for is the rash known as the bullseye rash, but this is not guaranteed to appear (it doesn’t always look like a bullseye either!) around 60-80% of people will get that. The trouble is you may be bitten in a place you may not see – on your back and groin. Vigilance is key however and checking yourself thoroughly if you have been out in nature as yhe best case is that you see it and are treated early.
However other things to be suspicious of:
Be wary of a summer flu: aches, chills, fever, headache and unusual summer symptoms, and seek treatment early. Joint pain is another hallmark of Lyme. If you feel you may have had contact with a tick make sure you tell your doctor of this. Doctors are wary of diagnosing Lyme and this is because there is controversy around Lyme. Doctors have been given the message that it is over diagnosed and people are given antibiotics needlessly, however, we have now swung too far the other ways now we are in a situation where we under diagnosing. People need to advocate for themselves and be vigilant if they believe there is a chance you have been bitten.
What is the way (currently) a diagnosis occurs? Is there a test?
Even doctors acknowledge that the standard Lyme test is not particularly reliable and particularly if you test at certain stages. Essentially however It is a two part test: first they look for the load of antibodies in your body – if there is enough to signal your body is fighting something. If you test positive for that you get to the next test known as the Western Block where they look for specific antibodies. You need two out of five of those specific antibodies in the early stages and these are the ‘markers’ of Lyme.
The trouble is that in the first month of contracting Lyme you may well not test positive. Even after that when the success goes up there is a group of patients that will never test positive – about 13% of those who suffer neurological issues associated with Lyme according to published studies dont test positive. It is widely known that the test does not work universally. There is research going on to improve it but there hasn’t been a huge willingness to let go of the status quo.
In fact, there was a study back in 2016 – a group of 21 researchers well regarded researchers who looked at all studies around the Lyme test – in every one they found there was a high risk of bias. Which means it is very hard to trust the outcome of the test. As a result they could not endorse the test results for use in clinical practise as there were so many issues with it. We know we have to do better on diagnosis – especially where there are such a range of symptoms.
What are some of the symptoms of undiagnosed Lyme that you may have had a long time?
Lyme disease is called the ‘Great Imitator’ ie. there are a lot of symptoms that can be put down to something else. The first of this type of disease that presented with a similar broad range of symptoms was actually Syphylis. It is not coincidental that both of these are caused similar bacteria. Syphilis is also known to become chronic to be resistant to antibiotics and cause a wide range of symptoms. Among these symptoms are neurological and psychiatric – at one point US psychiatric hospitals were full of people with Syphilis (around 25% of people). Sadly you can experience similar symptoms in late stage unchecked Lyme. You can have depression and bipolar, even a case of schizophrenia related to it has been reported. That is just one class of untreated symptoms. You also have neuromuscular functions: problems with walking. Basic functions of the joins, it can even go to the heart. It also goes to the eyes with vision problems. This diversity makes it so difficult to diagnose. Fatigue is also a hallmark – at all stages but particularly at the later stages. Because it is difficult to ‘measure’ and is subjective it can be easily dismissed by doctors. Dismissal of symptoms and impact on the brain can leave people depressed.
Children have the highest rate of infection per capita in the US: are there any specific things that happen to children who do not get diagnosed?
It can be devastating for children if it gets out of control. Children can lose months of schooling, it is a very serious disease when it advances. If it is caught early you’re pretty lucky and you have a high odds to fully recover. Even in 10-20% of early treated cases you have lingering symptoms remnants of the disease which we call Post Treatment Lyme Disease symptoms which is really just a label for symptoms which there is uncertainty what is behind.
Children aged 5-9 yrs old are most affected and boys are most at risk and really the key is protecting our children and ensuring they are not bitten by ticks. How do we do this?
That may be treating their clothing with a repellent. In a risk/benefit scheme I would take the risk in using a repellent vs the risk of coming into contact with a tick.
We need to check children thoroughly for ticks when they come in the house
We need to educate them and warn them away from playing in tall weeds and rolling in leaf piles and encourage them to be aware
We need to be vigilant: checking them and ourselves and encouraging them to do the same.
How do you as a grandparent – knowing what you know – approach protection yourself and is it the case that Lyme is only transferred if it has been attached for 2-3 days. Is that correct?
The CDC says the tick has to be attached for 36-48 hrs but there is evidence in the scientific literature of infection being transferred as low as 16hrs and many doctors that actually treat Lyme believe it is much lower than that 36 hr guidance. So if you have a tick firstly how do you know how long it has been there? If it is even slightly engorged the pathway to infecting you has opened so there is not really a ‘safe zone’.
So the first stage is to check your children: is there a best practise way to do this?
You asked me what I do for my grandchildren, during the season: once or twice I will take their shoes and socks and perhaps trousers and lay them out on my driveway and I will spray them with Permethrin which is available in Europe and is used by people who work outdoors. It soaks into the clothing and lasts around a half dozen washing so you don’t need to think about it every time. You can even last clothing that is soaked in it. I also do it for myself. As I say in my book – I read a lot of science based literature on the safety of Permethrin – soldiers wear it all day and have clothes soaked in it. I have also read a lot about the impact on children and I am convinced under this risk/benefit scenario that it is safe and it is certainly safe vs the risk of exposure to Lyme.
But what happens if you live in a City and you’re in a playground is there less risk?
Certainly living in a city you are safer, but that said they are in NYC city parks and Central Parks – birds move them around and small mammal populations do spread it. Any place where there are trees, woods and foliage you should consider to be a risk area. In some Paris parks there are warnings. So being in a park in the city doesnt mean you are protected it just means you have a lower risk than if you are in a suburban area.
As with everything there is a risk/benefit – with insecticides etc you need to use when you think the benefit outweighs the risk:
Well as a homeowner I never previously used herbicides, insecticides but after I learnt this I started to appreciate it as a necessary precaution.
What about seasons for ticks – when is the most risk?
In the US May is Lyme awareness month as it is considered to start here. I know a prominent tick researcher who suggests we need to move it to April. The Spring essentially the most risky time this is when the nymph ticks come out (the ones large in the previous summer) and are usually infected and these are the poppy seed size ticks. May/June are the big months. The season starts to recede in July/August but this is in the US and can change depending on the location. However, as one scientist I know said there is however really no safe season as even in winter we are starting to experience warm and balmy conditions which can lead the adult ticks come out even during the winter season. The exception is a layer of snow or ice. During the peak of the summer the ticks don’t like heat and they tend to be driven back into the soil but then September and October you get the adult ticks looking for their final meal and looking to lay eggs so you have a curve high risk in Spring, lower in summer and then up again in September/October. The positive in the later months is that the adult ticks are easier to see at least.
After spraying the clothes – what are the other things you do to protect kids?
Since day one they have been told about ticks. They have been told where they are, that you have to be careful and you have to look. They are being educated to be aware and I have told their parents to check in particularly groin, underarms, the hairline and any hidden areas. Be vigilant. There is not much we can do – these are the tools we have but they are frankly inadequate. We don’t have a vaccine or a good way to control in the environment. However other things like tucking your trousers into your socks when you walk into grass is a basic thing that can help. We do need better tools however to fight this epidemic.
When you check your children, what else to look for or to do?
Check your children for these poppy seed bugs. You also need good tweezers and preferably one specific to tick removal. The reason being when the tick attaches they burrow into the skin and are anchored. You dont feel when they bite as they emit a numbing agent that is emitted when you are bitten. You need a good tweezers that is fine tipped and wont squeeze the tick and will grab its ‘neck’. The reason you dont want to squeeze it is because you can squeeze the contents of the guts into your/your child’s body which is what you want to avoid as there are other things that can be in there other than Lyme as well.
If you dont know what you’re doing on removal, should you take your child to the doctor in case you make it worse?
Well often we can’t get into the doctor so quick and you do not want to delay. If you have a good set of tweezers and you can go online and look at proper tick removal. I would go to the website of known Lyme advocacy groups like lymedisease.org very reliable site.
If you had a child that is bitten by a tick and they get the Lyme ‘bullseye rash’. If it is treated early there is a good chance of recovery but how is Lyme ‘treated’ how effective is that? Does it eradicate the bug/the risk of gut microbiome disruption etc.
Ok so I am going to backtrack a touch, I said you dont have to go to the doctor for removal of the tick, however, you may want to go for a child in particular for treatment of a bite. If the tick has only been there a short time, if it is not engorged it may not be urgent, but if there is a question it has been there several hours you may want to go for treatment of the bite. There is controversy within mainstream medicine about what to do. The standard approach is 500mg of Doxycycline and there is some evidence to say that heads off a Lyme infection. There is another school of thought that suggests a full course of antibiotics is necessary and the jury is out. It is hard for parents – do you insist on a full course with the downside or risk the shorter course?
If a child gets the rash – known as the ‘bullsheye rash’ (although the rash may come in various forms) you should take them in immediately and of course if you start to have any symptoms you need treatment. Generally upon symptoms showing it is 10-28 days of Doxycycline. There is a good deal of resarch however to show that this doesnt always work at eradicating the infection. The chances are good if it is caught early although there is 10-20% that may still have persistent infection or may even have something else. This science of persistence is based largely on amilmal cycles using Doxyclcine in monkeys and mice models who continued to have infection. It is those cases of persistent and lingering symptoms that are most problematic and these people end up being rejected by mainstream medicine who argue they have already been treated.
Is there anything that has been proven to eradicate or new treatments making headway?
Lyme practitioners who take on these patients who are rejected by the mainstream have several different approaches. Some will give antibiotics in combination with other therapies, longer courses and even herbal remedies. Oil of Oregano and Stevia has shown some progress but much of this use is ‘off label’ and they get little help in terms of institutional help currently. The most recent breakthrough has been a drug called Disulfiram (sold under the trade names Antabuse and Antabus) which is actually an old and inexpensive drug given to alcoholics to repulse them from alcohol. What’s interesting is that it has been shown to have antimicrobial properties. In test tube studies it has been shown to be very effective killing the Lyme pathogen. There is a paper published with good results in New York treating people with long standing Lyme and it is now in clinical trials. I suspect we will be hearing more about Dysuleran in the future.
What about stem cell or combination therapies?
The reality is that as it stands many, many different types of treatment have been tried. People try hyperbaric, ozone therapy and Others. There are some studies validating success and they don’t work for everyone. There is not a lot of data. I have heard that Stem cell has been used but I do not know enough about the success. Other therapies include boosting the immune system with Glutathione treatment and there is some evidence that that can work alongside immunoglobulin treatment and high dose Vitamin C. This is essentially supporting your body’s ability to fight it off. The trouble is right now we just cannot say, we just do not have enough data.
To put this issue in context: recently I went to clinical trials.gov (a website open to everyone) you can see ever clinical trials that is going on. For AIDS there is 11,000 trails vs for Lyme where there is 66. Of course you can justify some disparity but not this level. The trouble is that we have not adequately funded the work and as far as the clinical trials research has been very limited. By no means have we answered what works and what does not work.
So it does seem clear that this disease is being sidelined despite its growth – why is this?
There is a lack of urgency because of the way the disease has been framed by the care guidelines that were first crafted. The thinking was that it is a condition which is relatively easy to relatively diagnose and treat. However, as we have discussed there are many ‘buts’ to this. Mainstream medicine has started to acknowledge the limits to the test, and acknowledges that people will fail with the treatment of antibiotics. Despite this however, it continues to be pushed aside and there is a lack of funding. We need to find out why the test and treatment fails in a decent chunk of people.
So we need to focus instead on prevention? Making people aware?
That is an excellent point. Prevention is our biggest bang for the buck. If you prevent you dont need to worry so much about diagnosis not working and very expensive treatment failing. Prevention is the best thing. That means being vigilant, staying out of tall grasses and checking ourselves and our children. If people get my book pass it on to their doctors as the more they are aware the better.
This article is for informational purposes only. This article is not, nor is it intended to be, a substitute for professional medical advice, diagnosis, or treatment and should never be relied upon for specific medical advice. The information on this website has been developed following years of personal research and from referenced and sourced medical research. Before making any changes we strongly recommend you consult a healthcare professional before you begin.
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