Tick-borne Illness and Lyme Disease Awareness Month 2018

May is Tick-borne illness and Lyme disease awareness month. Every year, I spend the month of May trying to raise awareness for Tick-borne diseases, which includes an awareness giveaway that I run on Instagram (I will put a blog post up when that is live). There are many people who suffer from a Tick-borne illness, but are unable to get adequate medical treatment – I am one of them. I know people who have died because the Australian medical system would not help them. I hope that raising awareness will help to put pressure on governments  to properly treat people with Tick-borne diseases and not just let them suffer relentlessly. Last year I posted about my Tick-borne illness story and launched a fundraiser so that I could get treatment overseas. This year, I want to give you some information on the range of Tick-borne disease that are out there . I wanted to post this much earlier in the month, but my level of health is really low right now, which has made this very difficult to finish. I hope that this blog post gives you information that you can pass onto those that you know, so that you too, can help raise awareness for tick-borne illness.

There are many different tick-borne diseases. Some of them include Borreliosis (including Lyme Disease and Relapsing fever), Bartonellosis (including cat scratch disease and trench fever), Babesiosis (malaria-like parasitic disease), Rickettsiosis (includes Typhus and Rocky Mountain Spotted Fever among others), Ehrlichiosis (similar to Anaplasmosis but a different microorganism), Anaplasmosis, Mycoplasma, Tularemia and various viral infections. An individual tick can harbour more than one disease causing agent, and pass them all on to a human when it bites them. Patients infected with more than one pathogen at the same will find it much harder to get diagnosed and have treatment. When there is more than one pathogen infecting the same person, they are called co-infections. I’m going to briefly cover some of the main Tick-borne diseases so that you have a greater understanding of what ‘Tick-borne illness’ really means.

Borrelia

Lyme Disease
The most well known of all the tick-borne pathogens is Borrelia. One strain of Borrelia, Borrelia burgdorferi, is commonly referred to as Lyme Disease, as it was first discovered in Old Lyme, a small town in the USA. Since it was first discovered, other strains around the world that cause similar symptoms have been found. Borrelia afzelii and Borrelia garinii cause lyme-like symptoms in Europe and Asia, and only recently, in 2016, was another strain found in America that causes the same symptoms, Borrelia mayonii. Some people call all of these Borrelia species Lyme Disease, but that has caused problems in Australia, as Australian doctors only class Borrelia burgdorferi as Lyme Disease, and won’t treat patients unless they are positive for that specific strain. It makes sense to call all of these Borrelia Lyme Disease as the pathogens are from the same genus and cause the same symptoms, but you need to be aware that not everyone thinks that. Australian tick-borne illness patients are so badly treated that a senate enquiry had to be held last year, it concluded that there probably is a pathogen causing Lyme-like symptoms here, but it hasn’t been found. There is very little research being done on finding the pathogen behind those sick in Australia, so Australian patients aren’t able to get treatment here, even though many people have been successfully treated overseas with Lyme disease protocols.

Lyme Disease has three distinct stages, Stage 1 is called early localised Lyme Disease (bacteria have not yet spread through the body – bulls-eye rash can be seen in this stage), Stage 2 is called early disseminated Lyme Disease (bacteria have started to spread throughout the body – can include flu-like symptoms) and Stage 3 is called disseminated Lyme Disease (bacteria have spread throughout the body). There can be a long period of very few or no symptoms between stages, ranging from weeks to months to years -some refer to this as the latent stage. Lyme Disease symptoms are wide ranging, the early symptoms can include rashes (including the well known bulls-eye rash, but this is only present in less than 50% of cases), flu-like symptoms, swollen glands, fever, fatigue, nausea, vomiting, headaches and light sensitivity. Stage 3 or Late-stage Lyme Disease (sometimes referred to as chronic Lyme Disease) can be completely debilitating. The list of late-stage symptoms is very long, but some include muscle pain or cramps, bone pain, joint pain and swelling, severe fatigue, too much sleep or insomnia, profound weakness, partial paralysis, seizures, unexplained fevers, continual infections of sinus, kidneys etc, unexplained weight loss or gain, new allergies or chemical sensitivities, diarrhoea, constipation, vomiting, nausea, irritable bladder, shortness of breath, chest pain, heart palpitations, endocarditis and heart blockage, tremors and shaking, blurred vision, hypersensitivity to light and sound, loss of libido, sexual dysfunction, pelvic pain, mood swings, irritability, depression, disorientation, anxiety, memory loss (short or long term), confusing and difficulty thinking (brain fog), slurred slow or stammering speech, forgetting how to perform simple tasks or say simple words. There have been cases of sudden death in younger people that were caused by Lyme carditis which occurs when Lyme enters the tissues of the heart.

Borrelia burgdorferi and Syphilis (Treponema palladium) both belong to a group of bacteria called spirochetes. Spirochetes are spiral, “corkscrew”, or wavy shaped organisms that have their flagellum (tails) located inside their body.  Because of spirochaetes structure, they are able to cross barriers that are impenetrable to almost anything else. This includes the blood brain barrier which is why both can infect the nervous system (which is called neuroborreliosis and neurosyphilis). When untreated, both infections can cause permanent neurological damage. The reason why these two bacteria are commonly compared though, is because they both can cause a Herximer reaction when they die. A Herx, formally known as a Jarisch-Herxheimer Reaction, is an immune system reaction to the endotoxins released by these bacteria when a large amount of them die off. The destruction of the bacterial cell membranes releases bacterial toxins into the blood stream which causes a systemic inflammatory response. The symptoms can be mild, and flu like, or it can cause an exacerbation of all current symptoms and sometimes it can be deadly. Those with long term illness usually experience a much worse Herximer reaction, which can mean that antibiotic treatment becomes risky.

Awareness around tick-borne diseases if far better in America then it is in Australia, which means more people get early treatment, especially if a bulls-eye rash appears. Early treatment gives a much better prognosis for patients but there are still a lot of people in America who have had early antibiotic treatment, but still show signs of a tick-borne illness. Approximately 10 to 15 percent of people who are treated for documented Lyme Disease in the USA continue to experience symptoms well after treatment. The official term for this in the USA is post-treatment Lyme Disease syndrome but it is also commonly called Chronic Lyme Disease. Doctors have previously believed that the bacteria was gone and they weren’t sure why the symptoms persisted, but new studies are coming out now that are indicating that these patients do in fact still have the bacteria in their body, which is the reason for ongoing symptoms. Borrelia is not antibiotic resistant but it does have a special trick that allows it to evade antibiotics. Borrelia can make a biofilm which protects them from both antibiotics and the immune system. When the bacteria first enter the body, they are single celled organisms swimming freely in the blood, and are therefore referred to as planktonic bacteria. When environmental stress occurs, either from the immune system or antibiotics, some of the planktonic bacteria attach to a surface and create a biofilm around them, commonly referred to as slime. The slime stops the bacteria from being recognised by both antibiotics and the immune system. So the bacteria now have two different forms in the body which allows it to persist through antibiotic therapy. When the environmental stressor has gone (like stopping of antibiotics), cells from the biofilm can be released to become the original free swimming (planktonic) version. This explains why some patients feel much better on antibiotics, but once the stop they relapse. It also needs to be noted that this bacteria can burrow into bodily tissues, including red blood cells, muscles and bones, where it won’t be affected by the immune system or antibiotics, but will still be causing damage to the body. My explanation of biofilms is really basic, there is a lot more information on them out there if you want to find out more.

Relapsing Fever
Tick-borne relapsing fever is different from Lyme disease as it is caused by different Borrelia species including Borrelia crocidurae, Borrelia duttoni, Borrelia hermsii, Borrelia hispanica, Borrelia miyamotoi, Borrelia parkeri, Borrelia turicatae with other species being spread via louse. The main symptom of relapsing fever is, you might have guessed, repeated episodes of fever. Other symptoms can include headaches, chills, muscle and joint pain, nausea and vomiting. Once infected, the incubation period lasts 5 to 15 days, with the fever period lasting 2-7 days and asymptomatic period lasting from 4 to 14 days. Typically people will have 3 periods of relapsing symptoms but it can be up to 10. Death can occur when when a fever episode ends in a “crisis” which consists of shaking chills, followed by intense sweating, falling body temperature and low blood pressure. A two week course of antibiotics is considered the best treatment but Relapsing Fever has all the same treatment problems as Lyme Disease, with over half of those being treated experiencing a herximer reaction.

Bartonella

Bartonella are a genus of bacteria that live inside the cells lining blood vessels. Bartonella is an opportunistic pathogen which means it takes advantage of opportunities not normally available to it, like a weakened immune system. Scientists have identified multiple species of Bartonella but information is very limited on how they affect humans. Bartonella is spread via fleas, body lice and ticks. The bacteria first infect the endothelial cells (cells the line the interior surface of blood vessels), and then every 5 days some of the bacteria are released into the blood stream, where they infect red blood cells. They live within cells for most of their life cycle which protects them from both the immune system and antibiotics. The most well known disease caused by Bartonella is Cat Scratch Fever, which is caused by Bartonella henselae. Bartonella henselae also causes multiple other problems like bacillary angiomatosis, peliosis hepatis, endocarditis, bacteremia with fever, neuroretinitis, meningitis, encephalitis. For a long time, doctors believed that Bartonella was a mild, self-limiting disease, because otherwise healthy patients weren’t greatly affected by the bacteria. Now doctors are beginning to recognise that Bartonella can be a chronic infection, especially in those with a compromised immune system (which happens when there are other co-infections in the body). Symptoms of a Bartonella infection include fever, fatigue, headaches, muscle pain, bone pain, sore soles of the feet, swollen lymph glands, sore throat, low appetite, conjunctivitis and an unusual rash that looks like stretch marks that comes and goes. Lyme-literate doctors know to look for Bartonella when they have a patient that has tick-borne illness symptoms along with prominent neurological symptoms. Bartonella can cause seizures, ataxia, tremors, blurred vision, photophobia, headaches, poor balance, brain fog, cognitive problems, memory impairment, Postural Orthostatic Tachycardia Syndrome (POTS) and various problems with mood stabilisation, as well as depression, rage and anxiety. A chronic Bartonella infection can also cause endocarditis, (infection of the cells lining the heart), which causes chest pain, shortness of breath, palpitations and can even damage the heart valves.It can also cause liver and spleen enlargement, irritable bladder, pelvic pain, kidney disease and potentially infertility. Ischemic stroke, cerebral arteritis, transverse myelitis, radiculitis, grand mal seizures, epilepsia partialis continua, status epilepticus, coma, and fatal encephalitis have all been documented in patients with chronic Bartonellosis. Treatment with two different antibiotics for 2-4 weeks just after infection can work for some patients, but many with long term infections still have Bartonella in their system after antibiotic therapy. There are some Lyme-literate doctors who believe that Bartonella is even harder to eradicate than Borrelia.

Babesia

Babesiosis is a malaria-like parasitic disease that is a common co-infection of Lyme Disease. Babesia infect red blood cells and can therefore be transferred through blood transfusions and sometimes from the mother to unborn child. There were 12 fatalities in the USA from 2005-2008 from Babesia contaminated blood transfusions. The severity of illness is wide ranging with some people being asymptomatic and others having intense malaria-like episodes that can result in death. Those who are immuno-compromised (like those with other co-infections) are more likely to experience debilitating symptoms. Symptoms include fevers and influenza-like symptoms, sweats, fatigue, headaches, muscle and joint pain, chest pain and shortness of breath. When the infection progresses, weight loss, photo-phobia, nausea, vomiting, very low blood pressure, jaundice, liver problems, kidney failure and severe hemolytic anaemia can occur. Symptoms typically develop 1-3 weeks after the tick bite but the bacteria could potentially be in a person who is asymptomatic and only cause symptoms when other illnesses cause the immune system to to become depressed. Babesiosis is typically treated with a combination of anti-parasitic medicines but relapses can happen. It is believed that the nymp stage of the tick is the most likely to pass on Babesia and because of that, most people won’t even know that they were bitten in the first place. Adult ticks can still pass on Babesia too though.

Rickettsia

You might not have heard of the Rickettsia genus before but chances are, you know of some of the illnesses these bacteria cause like Rocky Mountain Spotted Fever, also known as Brazil Spotted Fever (Rickettsia rickettsia), Australian Tick Typhus, also known as Queensland Tick Typhus (Rickettsia australis), African Tick Bite Fever (Rickettsia africae), Boutonneuse fever, also known as Mediterranean spotted fever (Rickettsia conorii), Flinders Island Spotted Fever, also known as Thai Tick Typhus (Rickettsia honei), Japanese Spotted Fever also known as Oriental Spotted Fever (Rickettsia japonica) and more. Rickettsia typically attacks the endothelial cells but can also attack the smooth muscle cells of small blood vessels. Before I go on, I do just need to cover some classification basics. Rickettsia contains two different groups, the Spotted Fever Group and the Typhus group. There used to be a third group called the scrub typhus group but that has now been reclassified into a separate genus, Orientia, which is in the same family as Rickettsia, called Rickettsiaceae. You will often see people include Anaplasma and Ehrlichia when discussing Rickettsia because they are in the same order called Rickettsiales. To make it easier on me (energy wise), we will just be covering the bacteria included in the Rickettsia genus and only covering the Spotted Fever group because the Typhus group doesn’t have solid evidence for tick transfer yet. The symptoms caused by Rickettsia are similar between species but the severity of illness varies significantly. Infection tends to begin with a lump on the skin (papule) at the site of the bite, which can eventually turn into a black scab (eschar). After an incubation period of 4 days to 2 weeks, symptoms of rashes, fever, malaise, fatigue, headaches begin and the closest lymph glands to the bite swell. Once the infection spreads, more lymph glands swell, with fever, malaise, fatigue and headaches getting worse and a cough, nausea, abdominal pain and vomiting starting. Untreated infections can cause hearing loss, nerve damage, paralysis, liver inflammation and endocarditis. Some Rickettsia species cause a moderately severe illness but some can be life threatening in 20% – 60% of untreated cases. Rickettsiosisis is hard to diagnose, even for doctors specialising in this field. Treatment is far more successful if the infection is caught early, but the typical treatment of antibiotics can be complicated if there are other co-infections at play. Current studies are trying to determine if a wide range of chronic health conditions are associated with long term Rickettsia infections.

Tick-borne Illness

This is obviously not a complete list of all the tick-borne disease out there, but it is a good start towards understanding the wide range of tick-borne illnesses out there. There are some complications from tick bites that aren’t classified as a tick-borne disease, but I just want to touch on them quickly so that you know about them. In Australia, the most well known tick is the Paralysis tick (Ixodes holocyclus). It is well known because a bite from one of them can be fatal to companion animals if they don’t receive immediate veterinary care. What people don’t know is that in rare cases it can also cause paralysis and even death in humans too. Death from this tick is however more likely to happen when a person has a severe allergic reaction to the protein in the tick saliva. The more bites you get, and therefore the more exposure to the proteins, increases the chance of an allergic reaction – some people even get reactions from the tick just walking on their skin. Another allergy problem with this tick is a red meat allergy. Some people bitten by the Australian paralysis tick will go on to have a severe allergy to red meat, which can even be fatal (this is a reaction to alpha-gal). Ixodes holocyclus is the tick believed to carry the lyme-like disease in Australia, but the initial symptoms of a tick-borne infection are waived off by Australian doctors as they blame it on the neuro-toxins from the tick. This means that early detection very rarely happens.

Tick-borne diseases are frequently misdiagnosed as Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), Fibromyalgia, Multiple Sclerosis (MS) – Lyme and other co-infections can cause leisons on the brain that look like MS lesions, Amyotrophic lateral sclerosis (ALS) or Motor Neuron Disease (MND), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, various forms of Arthritis, Sjogren’s Syndrome, Thyroid Disease, Sleep Disorders, early Alzheimer’s, Psychiatric Disorders and many other illnesses. Chronic tick-borne infections often end up causing auto-immune conditions because the body starts attacking itself when it can’t get to the bacteria. Once the underlying infection is treated, the symptoms go away.

One of the barriers patients have for treatment is the unreliable testing of tick-borne disease. The reasons for the unreliability of testing varies between diseases, but the tests used to diagnose all of the diseases I have listed, frequently produce false negative results. That leaves patients showing obvious signs of tick-borne disease without treatment. Lyme-literate doctors know these diseases well enough to be able to diagnose on symptoms and supporting tests, but they are hard to find and often very expensive. If you’re in Australia, it won’t matter, as doctors are being shut down for treating tick-borne diseases, so you don’t have the option of early antibiotic therapy here.

Prevention and tick removal

If you ever suspect that you have a tick-borne illness, seek medical help immediately. Early diagnosis and treatment are really important. Preventing a tick bite is also important because you don’t know if you will be one of the unlucky ones where it will ruin your life. Not every tick carries disease. Some people can be bitten multiple times and not be infected by anything and others (like me) can be bitten once and be infected with multiple co-infections at the one time. Ticks in the nymph stage can bite and pass on disease, but those bitten by a single nymph may not know they were bitten because a nymph is the size of a poppy seed. Many people don’t even know when they’re bitten by an adult tick as the tick excretes small amounts of anaesthetic into the wound via their saliva so that you won’t feel the bite. The only reason why the paralysis tick was found on my head was because the neuro-toxins were giving me a headache at the time.

The best tips for preventing a tick bite according to both Australian and American governments are to avoid areas that are tick infested when possible. Wear appropriate clothing in tick prone areas. Wear long sleeves and long pants that are tucked into shoes, and a wide brimmed hat. Some people will even put tape around areas of clothing that a tick could get in. Lighter clothing will make spotting a tick much easier. Use an insect repellent with DEET or Picaridin on the skin and treat clothing with permethrin. Stick to the path that you are walking and avoid brushing up against any foliage. Ticks often pick well used paths and wait for their host on the very tip of grass and shrubs. Ticks keep their front pair of legs stretched out so they are always ready to grab on to a host that is passing by. Before going inside check all clothing so that you do not bring a tick inside with you (and obviously check your pets, ticks can pass diseases on to them too). Put clothing straight into a hot dryer, check yourself for ticks and then have a hot shower. When checking for ticks, don’t forget to check every skin fold and any area with hair, ticks are frequently found behind the ears.

If you do find a tick and are near a medical centre, go there to have them remove it. If you are allergic to ticks, head immediately to the the nearest emergency department. If you are unable to do this, then you will want to remove the tick as soon as possible as the longer it is on, the more likely it is to transmit a disease, but removing a tick wrongly could be even worse. The best thing to have is a specialised tick removal tool that slides under the body of the tick and levers it off the skin. Most people won’t have one of these on hand, so instead use a pair of fine tipped tweezers. You will need to grab the mouth parts of the tick attached to the skin and lift it up slowly. Do not grab the body of the tick as that could squeeze more into the wound.  Always seek a medical attention if there is a problem. These are the guidelines of the Australian department of health. They do mention that there are places recommending to kill ticks in their place by freezing them, but to not do that as there is no evidence based research on this method of removal. The tick could potentially regurgitate it’s stomach contents when it dies, so always use the health department’s recommended tweezers removal method.

Raising Awareness

I was bitten by a paralysis tick when I was the age of 10 and I turn 29 in a month. That’s nearly 19 years that the bacteria in my body have had to multiply. Every organ and system in my body is now infected and my quality of life is very low. I was only diagnosed with tick-borne infections 5 years ago as doctors hadn’t thought of that possibility earlier. The infections are so advanced now that antibiotic treatment is not a viable option for me, so I have to go to Cyprus to get experimental treatment. I say experimental because it isn’t an accepted treatment method in Australia (nothing is), but I know of many other people in similar a situation to me who have had great success in Cyprus with the combination of Ozone therapy and Hyperbaric Oxygen Therapy. Studies are starting to come out that are showing the benefits of these treatments. I have my treatment booked for October this year (2018) and I will do a blog post when I get back to explain what it was like, but in the meantime I will keep people updated via updates on my fundraising page.

I hope that by writing these blog posts and doing these giveaways, that more people will start to understand tick-borne illnesses and just how debilitating they can be. I don’t want another person to have to suffer the way I have, and be forced to go overseas for treatment because the Australian government won’t allow it here. There are too many people who have died because they couldn’t access treatment, I don’t want another life to end that way. You can help raise awareness for tick-borne diseases by sharing this blog post, participating in my upcoming giveaway and by telling everyone you know that tick-borne illness is real and those suffering desperately need help. I would love to know if you have learnt anything from this post or if you can going to do something to help raise awareness for tick-borne illnesses and potentially save lives – let me know in the comments.

Don’t forget to follow me on Instagram so that you can see when the awareness giveaway is up or subscribe to my mailing list to have all my new blog posts sent to your inbox.