Chronic Lyme Disease – Everything you need to know

 

Everything you need to know…
Ok, firstly I have to confess, this is not EVERYTHING you need to know about Chronic Lyme disease, but it’s close-a-bloody-enough! If you have just been diagnosed, know someone who has been diagnosed or think you may be suffering from it, then this article will help you. It explains a little about what it is, how the NHS view it, types of treatment and all the other bits in between.

Lyme disease
You may have heard a lot recently about Lyme disease, it’s been talked about a lot – from Avril Levine (Pop singer) to John Caudwell (billionaire business man) and 11 members of his family, there have been interviews on the telly and articles in the newspapers about people who have been diagnosed with the life changing illness. It’s as a result of this media coverage that I decided to look into it and have since been tested and diagnosed with chronic Lyme disease!!

Now if you’re new to my blog, you’ll know that when I started out blogging I was adamant that I would refrain from talking about my health issues because I wanted my blog to be my outlet, a distraction and somewhere I would feel ‘normal’ again. That said, I have gone on to write a few small articles that are health related because I realise that some of the information that I learn along the way could be helpful to others – especially those who may be going through similar symptoms.

My story – Recap
If you haven’t yet heard my story I’ll give a brief recap but you can read the full article here. Basically over six years ago I was diagnosed with Myalgic Encephalopathy (known as ‘ME’ for short but also known by the name Chronic Fatigue Syndrome – CFS) and was pretty much told (by the NHS) that there was little that could be done about it. I have been ‘taught’ how to learn to live with the condition and that was that (yep it was utterly useless and massively unhelpful!). Fast forward to 2013 and in the late October I was (really lucky) to get an appointment with a private specialist who treats ME (although she prefers to refer to it by the name Chronic Fatigue Syndrome) and I have been following her treatment protocol ever since.

Now the thing with ME/CFS is that it’s not quite a diagnosis as such, it’s really an umbrella term or a bracket where doctors ‘place’ you when they can’t find any else wrong with you (on the grounds that you ‘fit’ the ME/CFS criteria), so symptoms can vary from person to person. They (the NHS) will assure you that your blood work is fine and possibly that you are healthy!! The Specialist that I see doesn’t treat the named condition as such, she treats the patients individual symptoms based on in-depth medical questionnaires, blood tests, saliva and stool samples. So for the last two years I’ve been having thyroid and adrenal treatment, mitochondria support, nutritional support for deficiencies, antibiotic treatment for a bacterial overgrowth, including following a specialized diet (similar to a Paleo diet but tweaked based on long-term research by said doctor) which helps with hypoglycemia (which I also have). I’ve also experienced a ketogenic diet too (which you can read about here) to help manage a number of my symptoms but now remain low carb and high fat.

I have also had to learn how to pace, learn ways to deal with stress / emotions, follow a strict bedtime routine (also known as good sleep hygiene), remove chemicals from my life and beauty regime (read about it here) and learn to understand the individual symptoms that I am dealing with (the hardest thing to do when you have brain fog and cognitive issues!). So as you can see, it’s been a pretty tough 2 years for me and yet it seems I am only just beginning – because two weeks ago I tested positive for Lyme disease. So now I am awaiting a treatment plan, which although it’s a lot for me to get my head around, I’m looking forward to the next stage of my journey!

Why I tested for Lyme?
After seeing so much media coverage about Lyme I decided to do a little reading into it because I didn’t really know what it was (other than you had to be bitten by a tick) and thought it was a good idea to ‘rule it out’. However the more research I did the more it seemed possible for me to have it (prior to falling ill, I had joined a ramblers association and began walking 5-10 miles on the weekends that I wasn’t working). I found a questionnaire by Dr Horowitz (the link to this is near the bottom of this article) which I answered and it was when I got to the end (and calculated my score) that I began to realise that I would need to look into testing. My next stop was to answer two short questionnaires from Armin labs – it was a ‘tick list’ for symptoms which you fill in, send to Armin Labs in Germany and based on your answers, they suggest which blood tests you need (there are different tests for the different co-infections, which are common with Lyme – the link to Armin labs and their two questionnaires are also shown further down this article, near the end).

So I filled these in, emailed them to Armin then decided to go through my GP for an NHS Lyme blood test (which are so incredibly unreliable that I wasn’t expecting much!). No surprise, it came back negative and my GP’s office told me ‘no you don’t have Lyme you are fine, no further action needed’ – ha! The ‘main’ test for Lyme is an ELISPOT and a CD57 – together they are able to detect if Lyme is present (it’s extremely accurate). So this was my next step, once Armin had emailed me back with a list of suggested tests (based on my symptoms), I decided to start off with the ELISPOT and CD57 and I REALLY have to give credit here to Armin Labs, because I had the bloods taken on the Monday (By my GP Nurse, which I had to pay for!), they were collected the same day and the by the Friday (4 days later) I had my results! It was a bitter-sweet moment, because it was the missing puzzle piece I had been searching for and it now means I can move on the next phase of my treatment.
NHS

Just like ME/CFS there are discrepancies between treatment, research and the long-term effects of Lyme especially between the NHS and private specialists and doctors who have actually had experience/ bothered their ass to do some research into it. It’s not just here in the UK that it’s like this – there are places in the US that ‘don’t believe’ the disease can be long-term (crazy huh?). For example the NHS website will tell you that there’s no such thing as “chronic Lyme” because they ‘don’t believe’ it exists. What they DO say however is that “A few people with Lyme disease go on to develop long-term symptoms similar to those of fibromyalgia or chronic fatigue syndrome. This is known as post-infectious Lyme disease. It’s not clear exactly why this happens, but it’s likely to be related to over activity of your immune system rather than persistent infection”.

There are plenty of research documents and articles that have studied the Lyme infection and it proves that it is an active infection and not an ‘over active immune system’ but it seems that NHS Doctors tend to be stuck in this mind-set, mostly because they are restricted by NHS rules and regulations which constrain them, or by a simple ignorance to Lyme Disease. All independent doctors will treat Chronic Lyme as an active infection; however the approach to treatment protocols will differ from one to another. The advantage however of independent doctors is that they have researched Lyme and now there are a few blood tests that have been developed that can detect the bacteria in the body YEARS after a person has been bitten (science is great don’t ya think?!) Now if that doesn’t get you thinking, I don’t know what will! I could go into detail and riddle your brain with the different perspectives on Lyme but rather than do so, it’s easier to refer you to some places that you can read up about it and make up your own mind.

Independent Research
When I say ‘Independent research’ I basically mean any research done on Lyme and the bacteria Borrelia that has not been carried out by the NHS. The information I’m about to give is taken from work by Lyme specialists all around the world – and most of it will be based on research found in the USA. The reason for this is because Lyme was first discovered in 1975 in a small town (named Lyme in Connecticut) which it was named after. It was originally mistaken for juvenile rheumatoid arthritis but was later elaborated on in 1981/82 by Willy Burgdorfer.

Lyme disease is caused by a particular kind of bacteria known as spirochetes. They are the most ancient type of bacteria on earth and although it looks like a tiny worm, the word spirochete literally means coiled hair and represents how the bacteria behave. Once infected, the bacteria literally corkscrews its way into tissues and areas they want to colonise. There are around 14 types of Borrelia (which is the scientific name for Lyme) but there is thought to be three main types that are considered to be the cause of Lyme and these are Borrelia Burgdorferi, B. Afzelii and B. Garinii. There are other species of Borrelia that have been identified, as well as subspecies but usually when talking about Lyme it’s one of the three listed above.

The bacteria commonly move into areas of the body where it colonises and these include the aqueous humor in the eye, the collagenous tissue around the knees, the skin or the heart tissue. Borrelia is very unique as they possess unusual features that are more often associated with more complex non-bacterial like forms. They also behave more like a parasite because of the way they metabolize and all nucleotides, amino acids, enzymes (nutrients etc) must be scavenged from their hosts. They also have the flexibility to rapidly rearrange their gene structure in order to hide from antibiotics and fit better into a variety of hosts (animal of human) as well as avoiding the host’s immune system. They have also been found to adhere to culture endothelial and epithelium cells, differentiated natural cells, brain cells and glial cells – typically living deeper within tissues that any other kinds of bacteria. They can move much faster in viscous material like collagenous tissues than they can in blood!

Independent research suggests that Lyme spirochetes are passed not only through tick bites but can be passed by infected people into breast milk, tears, semen and in urine. Babies have been infected through their mothers; however there has been little research on it so not enough is known. There is also research and evidence that suggests that ticks are not the only culprits but biting flies, mites, and mosquitos are also capable of transmitting the disease.

There is also evidence to suggest that the three stages of Lyme can differ from person to person and is likely to be why different doctors use a variety of treatment methods. Stage one is said to be early, when it occurs in days or weeks after initial infection. This is when there has been very little spread of the spirochetes and only a bull’s eye rash appears (if it does appear). Stage two is early – disseminated when it occurs weeks to months after infection and is when the disease has begun to spread but not yet become chronically entrenched. Late (or stage three) is months to years after initial infection and the disease has penetrated a great many parts of the body and established itself as a chronic disease. However the progression of the disease is different for each infected person and studies have shown that Lyme spirochetes are already present in both the aqueous humor of the eye and in the central nervous system within just days of infection!

There is literally tons of research that goes on to explain many of the symptoms from Lyme. For example it can go on to cause arthritis, infection of the central nervous system, physiological changes in the neuroborreliosis (headaches, migraines and stiff necks), heart issues (Lyme carditis), eye problems such as ocularborreliosis and otoborreliosis, immune system issues and Herxheimer reactions – the reasons all point to the ways in which the bacteria interfere with the normal functioning of the body and how it infects the various tissues, cells and so on. I could go on to explain in more detail but the truth is its way too much for me to get my head around and it’s really in-depth stuff! The main point I want to make is that all this research suggests that the NHS is wrong and long-term Lyme is not simply the immune system ‘over reacting’ – it is way (way) more than that!

What is Lyme and what are the symptoms?
So what are the symptoms of Lyme and how do you get it I hear you ask? Well, you catch it from ticks. Ticks are tiny little insects and are commonly found in very rural areas (woodland or heath land) where there are cattle and/ or dear. Some areas are considered more of a danger zone than others. Not all ticks carry the Lyme Borrelia disease; it’s only those who have bitten other animals that are infected with it – causing them to become infected, so when they bite a human they pass the disease on. Many people ask how could they get bitten without knowing and the answer is that the ticks are so very small they can be missed. Ticks go through three growth stages (Larval, nymph and adult), when they are Nymph stage they are so tiny – about the size of a pin head. Not only would it be really difficult to notice if one became attached, their bite is painless and you’re unlikely to feel anything. There can be the tell-tale ‘sign’ of a red bull’s eye rash (a red rash that takes on the appearance of a bullseye) but not everyone experiences this. The NHS say that if it’s detected early on it can be treated effectively, but if treatment is delayed (which is often the case as people don’t realise they have been bitten), the person has a risk of developing severe and long-lasting symptoms.

NHS Symptoms list
The first hand symptoms a person will experience include the tell-tale rash, flu-like symptoms, tiredness/ fatigue, fever, headaches, chills, stiff neck, muscle and joint pain. What’s even more worrying are the long-term symptoms that occur later if it’s untreated. These can develop anything from months the years later!

They include:-

  • Pain and swelling in the joints (inflammatory arthritis).
  • Problems affecting the nervous system – such as numbness and pain in your limbs, paralysis of your facial muscles, memory problems and difficulty concentrating.
  • Heart problems – such as inflammation of the heart muscle (myocarditis) or sack surrounding the heart (pericarditis), heart blockage and heart failure.
  • Inflammation of the membranes surrounding the brain and spinal cord (meningitis) – which can cause a severe headache, a stiff neck and increased sensitivity to light.So as you can see, there are some pretty serious symptoms there and those infected usually don’t just suffer from one or two of these symptoms, it’s a cocktail of them so life can be pretty crappy to say the least!

Herxheimer response
One thing not mentioned above is the Herxheimer response or Herx for short and also known as a ‘die off’. The Jarisch-Herxheimer reaction is named after Adolf Jarisch and Karl Herxheimer, two dermatologists who first discovered the reaction when treating patients with antibiotics for syphilis. It is the body’s reaction to endotoxin like products released by the death of harmful micro-organisms within the body during antibiotic treatment. Put in simple term it means that as bacteria/ germs are killed off by antibiotics, they leave behind debris and the body struggles to remove them quickly enough from the body. Herxing in chronic Lyme can be really (and I mean REALLY) problematic as it can cause fever chills, hypotension, headache, tachycardia, hyperventilation, flushing, myalgia (muscle pain) to name a few! As a result it is important to detox regular when taking antibiotics for Lyme because it can help prevent the toxins from building up. Below are a number of detox solutions that you can follow to help, you may have to combine a few methods or try different ones to see what works best for you.

Testing
The problem with Lyme is that many people can be suffering from it and not even know! The NHS often talk about the ‘bulls eye’ rash which occurs after a tick bite (from an infected tick) however only 1 in three people (UK stats) will have this symptom. In addition to this, NHS testing is so incredibly unreliably that a ‘false negative’ is a frequent occurrence. For example the NHS uses an EIA or ELISA (Enzyme Immunoassay or Enzyme linked immunosorbent assess) which looks for antibodies to the bacteria that cause Lyme disease (known as serology). If antibodies have not yet developed sufficiently its possible for these tests to show as negative despite an active infection. A false positive can also occur if a person has had Lyme for some time. The reason for this is because by this point the infection will have taken ‘hold’ and can hide within the body (inside cells and under bio films – coatings that help to protect it from attacks from the anti -bodies or antibiotics). The antibodies eventually stop ‘fighting’ the bacteria as the bacteria hides, there for there would be no antibodies in the body to detect! Only if a person has a positive EIA or ELISA test will the NHS carry out a second blood test called an immunoblot or Weston blot.

As a result many people go on to have private testing which is much more reliable and it tests for much more than the antibodies! For example Armin labs carry out a whole range of tests including the ELISPOT which is so sensitive it can detect bacteria levels as low as one cell in 100,000! It’s between 20 and 200 times MORE sensitive than a conventional ELISA, and also it also detects the secreted protein from the bacteria.

Where to go from here?
I’m not suggesting everyone with a health condition or a diagnosis of ME go get tested for Lyme but it is something that is worth considering if you live in an area where there is a high risk, if you partake in activities or sports that mean you spend a lot of time in woodland and country side surroundings or if you remember having a rash at some point but didn’t think anything of it (this is very common) If any of these points strike a chord with you then it’s worth considering (and when I say consider – I mean you also need to consider all the factors). For example you also need to look at the following – do your symptoms match up to those listed for Lyme? What is your health history like? Can you trace back through your history and roughly identify a time when you began getting sick? What other routes have you been down or already tried? Now all of these are questions you need to think about before deciding whether you should be tested for Lyme and if you have a good GP, private medical or natural health practitioner it’s always worth talking to them and seeing what they think, because they will already have your details / medical history information from when you first started seeing them. If you don’t have someone to discuss the matter with, you might want to think about finding someone (someone who is qualified, comes highly recommended or is familiar with your named health condition or issues). Yes, it will cost, but in the long run it could help you get to the bottom of your underlying issues.

Take my journey as an example – treating ME/CFS is very much trial and error because there can be so many issues – thyroid, adrenal, gut, etc. So it’s about working your way through, treating each different element. As you work through them, you should start to improve, unless you have yet to find the underlying culprit – the ‘thing’ that is holding you back. Last year, when I had still not improved, I had a comprehensive digestive stool analysis as it was the next logical test for me based on my medical history and it revealed gut dybosis (also known as small intestine bacterial overgrowth). I had thought at the time that this was the ‘missing piece’ but a year later – having been treating this aspect, my health hasn’t improved. So again, back to the drawing board, it was about looking for the next logical step to take to finding what was preventing me from improving.

It was after seeing some high-profile instances of Lyme on the TV recently (and seeing how similar some of the symptoms were) that got me reading up about it. I tried to think of a time when I would have come into contact with a tick (when I was a rambler) and worked out the time scale I had joined my local ramblers. The time scale fitted – it was within a few months after I started rambling that I began getting sick! So as you can see – it all seemed to fit for me and that was my reasoning for getting tested for Lyme. It might be that there may be other things I need to target in order to improve (and this might not be my ‘missing piece’) but until I start treatment I won’t know, but either way, knowing it’s a factor means I can treat it.

Check list
It’s always worth ruling it out as a factor, which is what I did – except I happened to ‘rule it in’.
Once you make the decision to consider Lyme testing I would say to do the following things

  1. Take the Horowitz questionnaire – it can help you recognise whether you are a high risk or not.
  2. Fill in the questionnaires from Dr Armin and send them off to their lab. In a few days they’ll get back to you and advise if you are displaying symptoms and will suggest tests that they think you should have. NOTE if you have co-infections (which are really common) the lab will recommend you get tested for any co infections that you may be displaying symptoms of. I didn’t get tested for co infections, it’s something I may have to consider, but my initial aim was to rule Lyme in or out so I did the ELISPOT and CD57.
  3. Consider going to your GP and being tested with them – it may come back as negative but it’s always worth a try!
  4. Consider private testing.
  5. Treat yourself – now this is the tricky bit; if you go for private testing you’ll need a doctor to interpret your results and the NHS won’t get involved with interpreting a private test so you’ll need to pay someone privately. If you don’t have the finances for this you can consider treating yourself. Now I know that sounds a bit risky but the fact is this – you can’t buy antibiotics or certain medications so it’s unlikely you will do yourself any harm, but you CAN treat Lyme with herb protocols which have shown to be effective. To do it this way (and many people do – in fact some people herbally treat for Lyme if they suspect it and can’t afford testing!) you will need to do your own research, which isn’t as difficult as it sounds. You can join Facebook groups and forums where other people are doing the same. You can also purchase books written by other people who themselves have overcome Lyme. Although herbal treatments are relatively safe, always take care when using them – make sure there is no interaction with any medications you might be taking and check the dosage. If you can’t find the information out yourself you can always ask at your local health store. It’s easier if you follow a protocol from a book as it will have all the information you need regarding dosage, interactions and so on.
  6. Purchase books – this is useful whether you self-treat or not, because it can help you understand what going on in your body and the hows, whys, and wherefores!

Links
Horowitz Questionnaire – the best way to get this is to google ‘Horowitz questionnaire’ and it will come up in the search.
Armin Labs – You can find all the details you need (the co-infections checklist and symptoms check list on their website)

Treatment
The treatment for Lyme is usually simple if you have recently been infected and know so. You will be given antibiotic tablets, capsules or liquid, usually for up to about four weeks. If your symptoms are particularly bad the NHS will refer you to a specialist to have antibiotic injections (intravenous antibiotics). The tricky bit is if you have had the disease long-term – because the NHS doesn’t agree that chronic Lyme exists! So that means that many people tend to either self-help (as mentioned above) using a variety of herbs or go through private doctors to get specialised treatment.

The difficulty is if you didn’t know you were bitten and have now found out (months or years later!) you will be considered as ‘stage 2’ or stage 3 = chronic Lyme which means the infection will have already taken over your body. That makes treatment a lot more complicated as you will need to not only fight the infection, but deal with all the other issues that are a result of the disease e.g. such as thyroid or adrenal issues, gut problems and arthritis to name a few!

Antibiotics
One common treatment that doctors will recommend is antibiotics, but there ARE people who have managed to improve without taking these (but they tend to take a lot of the alternative solutions such as a combination of supplements and herbs). There are a whole range of antibiotics that doctors will use for treating Lyme and it will all depend on the doctor’s experience, knowledge of your medical history/ current treatment protocols and what your symptoms or co infections are. I was going to list them but there are just so many and in addition to this, you need to realise that what one person may be able to tolerate another person may have difficulty with.

As Lyme hides in the body it creates what is known as a biofilm. This is a protective layer that helps protect them against antibiotics and other form of attack. Lots of bacteria do this and it can make killing them off very difficult. There are medications that are aimed at helping to break through these barriers. Sere Peptidase is an over the counter product (derived from silk worms who produce it to break down their cocoon as they emerge as a moth) which does just this but there are a number of natural solutions including apple cider vinegar, false black pepper or clove. Targeting biofilms is crucial for treating chronic Lyme otherwise the bacteria will remain coated from them and can continue to live in the body.

Low Dose Naltrexone (often referred to as LDN) is a prescription only drug which can be used in Lyme treatment. It was originally used to treat people with drug addictions as it blocks the reception of opioid hormones that your brain and adrenal glands produce. However in the 1980s Doctor Bernard Bihari discovered that it helped the symptoms of patients with a wide range of conditions, including Cancer, HIV and Aids and Multiple Sclerosis (MS). It helps by encouraging the body to produce endorphins and by stimulating the immune system, which can help reduce immune activity. The dosage is very small in comparison to its original use (for addicts they would use 50mg, whereas for Lyme its starts at 1mg and can be increased up to 4mg).

Supplements
Supplements are recommended to help support the body as it will be struggling to perform properly; they can range from multi vitamins, to more selected supplements to target individual symptoms.

Multi vitamins – help to quench free radicals and raise antioxidant levels in the blood and lipids.
Co enzyme Q10 – I take a more concentrated version called Ubiquinol. Most chronic Lyme suffers will have poor function related to the heart, stamina and resistance to infections. Taking this can help alleviate these issues.
Vitamin B – this helps with neurological symptoms
Magnesium – helps with tremors, twitches, cramps, muscle soreness, heart skips and weakness.
Acetyl – L Carnitine – this helps with heart and muscle function
Methylcobalamin (Methyl B12) – This is usually a prescription drug but you can purchase supplements of B12 – usually ones that you take sublingually (under the tongue). It’s always worth buying a decent brand of this, yes it’ll cost more but it will be much more worth it. It can help heal problems with the central and peripheral nervous system, improve depressed immune function and help to restore more natural sleeping patterns. It can also help with energy as well.
Glucosamine – can provide long-term benefits to the joints
Vitamin C – is important to help maintain healthy connective tissue. It can cause acid stomach gas and loose stools, so if you suffer with this after taking, lower the dosage and slowly work up to a level that suits you.
Vitamin D – many Lyme patients are D deficient; it can also help with normal immune and hormone function. It can also help diffuse body aches and cramps that are not responsive to magnesium or calcium supplements.
Probiotics – Kefir is a ‘yogurt like’ drink that you can make yourself really cheaply (both with dairy or dairy free). It’s full of natural probiotics and is one of the best sources to have as it has a whole range of strains of (good) bacteria. It’s recommended to help replenish beneficial bacteria (gut flora) as antibiotics can deplete them.
You can purchase probiotics, but you ideally need to (regularly) change the strain that you take. You will also need to check that they are dairy free etc. if you suffer from intolerances.

Herbs
Milk thistle – helps to support liver function
Reishi max – An enhanced extract from cracked spores of the reishi mushroom; it helps people with a low CD57count (below 60) as it has been shown to augment function of the natural killer cells as well as macrophages.
Cordymax – A well-known herb from Tibet, it helps to improve stamina, fatigue and enhance lung and antioxidant function. It also raises superoxide dismutase levels, important to prevent lesions in the central nervous system.
Andrographis – is recommended as one of the best primary herbs to use in the treatment of Lyme as it is anti – spirochaetal, enhances immune function, protects the heart muscle, is anti-inflammatory crosses the blood brain barrier and enhances liver function.
Cats Claw – An immune potentiator; it stimulates the immune system and is an anti-inflammatory, is an analgesic, helps with the central nervous system, cognitive impairments and arthritis and muscle pain in Lyme.
Japanese Knotweed – enhances immune function, anti-inflammatory for both arthritic and bacterial inflammations, protects the body against endotoxin damage and helps reduce Herxheimer reactions.

Other items
Alka seltzer gold taken with glutathione has been said to be effective in reducing an acute Herxheimer reaction, however I have heard that its (alka seltzer gold) very difficult to get in the UK.
Activated charcoal – If you decide to take this I HAVE to stress that it’s important NOT to take it with other medications or supplements. If you take it, wait for 2 hours minimum after you take any medications, and at least 4 hours before anything else that you take! The reason for this is because it helps to counter poisoning and will attract/ absorb unwanted substances, carrying them out of the digestive tract. The problem is – it can’t differentiate between supplements/ medication and ‘the bad stuff’ so it’ll take it all (but not if you leave enough time before and after taking it). A lot of people tend to take it during the early hours of the night/ morning when they wake up e.g. around 4am as it means you can go back to sleep and leave it to do its thing, then when you wake later in the morning you can take your medication as normal.

Detoxing
Colonic and home enemas have been recommended as good ways to help detox the body, but they are costly (a colonic has to be performed by a qualified practitioner) and it can be messy/ gross (enemas are something that can take time to perfect if you are going down the self-help method). It’s still worth investigating if you struggle to find any other solution that is suitable for you.
Dandelion – helps to neutralise endotoxins, helps to detox the kidneys and increased bile production in the liver (bile is the means of transportation for toxins from the liver to the colon)
Epson Salts – made from magnesium sulphate, it’s absorbed through the skin when taking a hot bath (or can be used as a foot soak). The magnesium acts as a muscle relaxer and the sulphur increases bile production in the liver (always remember to wash the body/ feet off after soaking so that any toxins released from the body are washed away).
Lemon water – lemon in water is an age-old tradition. Adding 2 whole lemons into one cup of water to be sipped over half an hours’ time will help cleanse the body.

Diet
I haven’t got my head around the ‘Lyme diet’ (so to speak) just yet because I am already trying to digest (excuse the pun) all of the other information I’ve listed so far. But from what I have read, it’s important to cut all sugar and processed food out of your diet. It also focuses on eating lots of food naturally high in probiotics (Kefir, Sauerkraut and Kombucha to name a few), eating to help heal the gut and eating a diet full of nutrient rich foods. It also suggests eating a diet rich in healthy fats as well as eating low glycaemic index foods. Now luckily for me I have already been doing all of this by eating a stone age diet (similar to a Paleo diet) as well as being Ketogenic (low carb and high fat). You can either click on the hyperlinks or search my blog for paleo or ketogenic and you’ll find a number of articles that discuss both of these ways of eating (plus a load of recipes – yay!). I have read that some people like to ‘juice’ as it can help keep the body alkaline, but I’ve not yet explored that avenue.

Books
Beyond Lyme Disease
Healing the underlying causes of chronic illnesses in people with Borreliosis and Coinfections – Connie Strasheim
This book is really helpful because it looks into the other symptoms that occur with Lyme that are not always treated. Luckily for me my specialist has been treating my individual symptoms (many of which are talked about in this book) so in a way I am already on the right path. To name a few topics, it looks at adrenal fatigue, nutrient deficiencies, environmental toxins, GI dysfunctions, Mould and Parasites.

Healing Lyme
Natural healing and prevention of Lyme Borreliosis and its Coinfections – Stephen Harrod Buhner
This was the first book I purchased after I had received my results, as I read some really good reviews on Amazon. It has a really well-rounded approach to treating Lyme. It not only explores the antibiotics aspect but it has a lot of details on the various herbs that can be used. It doesn’t just tell you what treatments there are – but it tells you the reasons why, how and the bits in between. It also gives details on how to take the recommended herbs, and this protocol is fast becoming the ‘go to’ method to use for the best results. Many other books and websites refer back to Stephen Harrod Buhner (sometimes called Harrod Buhner or the ‘Buhner’ protocol). I think one of the greatest points in this book is the explanation as to why herbs work long-term verses antibiotics (the general idea is that the body sees antibiotics as an ‘attack’ where as they don’t see herbs this way, so herbs are reported to sometimes have a more of a success rate). It also discusses the risk of contraindications and interactions between other drugs and other herbs.

Other books
There are a number of books that have been recommend to me by other chronic Lyme suffers which I have not yet got round to purchasing. I will list them so that you can look into them and read their reviews. Amazon is great for looking at books because you can sometimes read some of the book/ look at the chapters before buying it so that you can get a ‘feel’ for the book and whether it’s going to be suitable for you :-
Suffered Long Enough – Bill Rawls (He also has a natural/ herbal plan you can purchase called Vital Plan)
Freedom from Lyme – Bryan Rosner
Why can’t I get better – Doctor Horowitz
Herbal Antivirals (also by) – Stephen Harrod Buhner

End note
Now before you finish reading all this I have to apologise for it being so long! I know, I am sorry – but I found that many people who knew my story of ME were asking me about my diagnosis of Lyme and wanted to know how I had been tested, why didn’t I go to my GP and what my treatment plan was etc. It was getting a bit much having to repeat myself and it made more sense for me to gather what I had learnt myself and put it together into one document – that way I could direct people here. I still have so much to learn and I can only imagine what’s to come. As I progress through my treatment and explore new avenues I will try to keep my blog updated of things that I find particularly useful, but it will have to be ‘as’ and ‘when’ as I already struggle cognitively and rely heavily on my husband to help me put my articles together.
If you have found this helpful, think it’s a lot of poop or have some words of wisdom I would love to hear what you think (yep, I want the good, the bad AND the ugly!).

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6 thoughts on “Chronic Lyme Disease – Everything you need to know

  1. Thanks for taking the time to write this blog, its a really useful read. I’m not sure if I have Lyme but your blog has given me a really good overview and clarity on the next steps I need to take.

    1. Oh wow! Thank you Leanne – it means so much to me to hear that it’s helped you (even if only a little bit). The Lyme aspects pretty new to me and I’m learning so much each day. If you decide to test for it or look into testing, I’ve found that the Epstein Barr Virus (EBV) is another route that is worth looking at (symptoms can be similar to CFS/ME and Lyme). I hope you manage to to get to the bottom of your health issues. Emma xx

  2. I found this very helpful …it pulls so much information together succinctly, making it more understandable. I suspect I do have Lyme and am considering getting treated. Thank you for taking the time to write this and I do hope you find the right treatment for your own recovery

    1. Thank you Sonia, I appreciate the feedback. It’s people just like you (and me) who are starting their journey and want to know where they stand – I am glad you found it helpful, and I’m hoping other people will too. I wish you luck with your journey. Em x x

  3. Hi- please research rife machine treatment. A friend of mine had Lyme for over 20 years and got completely Brett with this treatment. Great article

    1. Thanks Reuben, I’m glad you like it. I will take a look into the rife machine treatment, it’s not something I have yet to come accross yet but I always like to find out more when I hear of something new. I’m glad your friend improved – it’s inspiration for me to keep going with my journey. Em x

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