As most of you are aware, I have been battling a debilitating illness over the past number of years. After all, this incredibly complex, multi-systemic disease and its challenging nature was the major catalyst behind the creation of this very blog. I know I have touched briefly on various aspects of my personal life. I try not to go into too much detail as I believe it is important to keep the majority of your private life private. As a blogger, your life can be on display 24/7, but at the end of the day we are masters of our own destiny. We have the power to divulge as much or as little information about our personal lives as we see fit. Being honest, my life is not very interesting especially at the minute and I definitely do not want to bore my many wonderful followers by posting irrelevant material. Right now I feel that sharing my personal battle with illness could be of benefit to some people and also compliment the active awareness campaign that is currently taking place. So why now? Why is it my time to speak up that bit louder? Well I think I am at the stage where I can effectively combine my personal journey with the scientific knowledge I have gained to help raise awareness of this extremely misunderstood disease. I am forever passionate about giving people battling illness a voice so now is my time to speak up and share my own story.
Instead of bombarding you with the worlds longest blog post, I have decided to feature this very important topic across a series of blog posts. Part one (this post) being a basic introduction into the disease and its many complexities. In my next post I will go into some more detail on a personal level with regards how this disease impacts my life. For the final post I am looking into possibly featuring some of my Lyme buddies and how the disease has impacted their lives. It is important to highlight the fact that this disease does not discriminate against anyone regardless of age and/or physical fitness. I will also feature some of the treatment options people have undergone and the overall response to Lyme disease worldwide.
Lyme disease – feeling ticked off
As the title suggests, I along with an ever-increasing number of people worldwide are battling a chronic infection caused by the spirochete Borrelia Burgdorferi. This corkscrew shaped bacteria is carried by the Ixodes Scapulaeis tick aka the deer tick. These sometimes pin prick sized insects can be a reservoir of infectious material predominantly carrying the Lyme bacteria and various other nasty infections. I must point out that not all ticks carry these nasty infections and not everyone bitten by a tick will get Lyme disease or any other infection for that matter. I admit the chances of getting bitten by an infected tick is a cause for debate as there has been no independent research undertaken in Ireland to gauge the level of disease carrying ticks. If in the unlikely event you are unfortunate enough to get bitten by an infected tick and they successfully pass their infected material into your blood stream then the best chance of minimising damage to the body is to get immediate intervention. Studies have revealed that getting treatment at the early stages i.e when the tick is attached to the skin or when the telltale bullseye rash appears is vital in halting the disease progression and minimising damage to the body. The most effective form of treatment is doxycycline for a minimum of six to eight weeks although this is highly controversial as some studies suggest a minimum dosage of 12 weeks whilst the actual guidelines deem 2-3 weeks to be appropriate. Another vital point I must make is not everyone will display the ‘tell-tale’ bullseye rash. Some people may have been bitten in an inconspicuous part of the body, evidently out of direct site and some people for whatever reason just do not produce this specific rash at the site of inoculation.
In my case, I did not present with the tell tale rash. This unfortunately is a familiar story amongst the Lyme community and various lymies that I have gotten to know. Not displaying or spotting the rash can have disastrous effects on the body as the infection spreads and takes hold. As much as I hate having this infection, the bacteria itself is highly evolved and extremely adaptable. It has developed extreme methods of evading capture by the immune system. It quite cleverly takes over healthy cells whilst keeping the original cell cap (as I like to call it) in place. So when the immune system scans the body for a possible threat it will not recognise any of these cells as infected material but merely one of its own healthily cells because all the nastiness is hidden under the original cell cap. I find it fascinating, although I probably should not but that is just the scientist in me coming out. The unique spiral shape of this bacteria makes it easier for it to corkscrew its way into every nook and cranny of the body. It can also change shape depending on the situation and create a protective biofilm which is like an extra shield to protect it from attack and in some cases from antibiotics.
The symptoms – when your body feels like it’s being continuously ran over by a monster truck
Generally a person infected with Lyme disease will present with a whole host of symptoms including some if not all the major organs in the body. This infection can affect the musculoskeletal, neurological, cardiac, lymphatic, urinary, respiratory, endocrine, digestive and reproductive systems. It is an incredibly complex disease to diagnose and to effectively treat and hence has been continually met with misdiagnosis and scepticism by the vast majority of the medical community. Unfortunately, this scepticism does not predominantly lie amongst the Irish population but on a world-wide scale. The guidelines and treatments for all diseases worldwide are set out by the centres for disease control (CDC) in the states. This is mainly where all the confusion, conflict and controversy lies. The CDC’s guidelines on Lyme disease, when investigated, highlighted a serious conflict of interest with regards the members of the panel and the research undertaken by them. The results of this research being the base of current guidelines. There is a fantastic documentary called under our skin which covers this topic and explains it in more detail. Upon looking into and questioning the guidelines many doctors and scientific individuals in the states detected severe flaws in the outlined guidelines. So what does this mean for people with Lyme disease? Well the CDC fail to acknowledge long-term infection aka late stage Lyme or chronic Lyme as it is often referred to. This has caused a whole host of misery for the people who have been infected unbeknownst to themselves and who have received a whole host of inaccurate diagnosis over the years, when really the instigator of their vast array of symptoms is Lyme disease including and not limited to an array of co-infections.
You are right to think that this is an absolute nightmare and incredibly complex to get your head around. Fortunately for some of us, we have medical professionals (who are few and far between) who acknowledge our condition and the complex nature of the disease. There is no one shoe fits when it comes to this disease and hence the reason diagnosis and treatment can vary on an individual basis. The fact that nearly everyone infected with the Borrelia bacteria also tests positive for a host of co-infections in some shape or form adds to the complexity of this disease. A persons immune system can become overwhelmed due the a mixture of active bacterial and viral infections. As the immune system requires treatment in itself, a multiporonged approach is required to effectively treat a Lyme patients. This comprises of various alternative, supplemental, herbal, dietary and complementary therapy. It can be a case of trial and error to see what treatment will prove effective for each individual. Possessing these co-infections also make the overall treatment that much more difficult.
Unfortunately in Ireland, the overall opinion of Lyme disease is met with the same level of scepticism by the HSE and the government which makes it even more devastating for the many people suffering with this intolerable disease. As they say you can lead a horse to water but you cannot make it drink. Even when presented with data challenging the CDC’s guidelines both the HSE and government are reluctant to change their opinion or do they even want to? Are they afraid to lift the lid on the ever bulging can of worms. Sometimes playing ignorant is all these so-called ‘elite’ members of society can achieve. God forbid they actually took the time and initiative to think for themselves and go out and meet the suffers in their constituencies. If only they could walk a few days in our shoes or they themselves contracted this horrific disease then they would quickly find out that this is not just a psychological issue as many would have you believe. This is not a personal attack on any one individual but the system as a whole. Do they not realise that you can only brush things under the carpet for a certain amount of time before it evidently blows up in everybody’s faces.
I am a member of a voluntary support group for Lyme disease patients and their close support network in Ireland. The group is called tick talk Ireland and is managed by a team of truly inspiring individuals who are mostly Lyme disease patients themselves. They receive no payment or funding but provide an online place for people to feel listened to, gain support and information and most importantly feel understood. It is a well-managed resource that incorporates a safe and compassionate environment. These individuals are the powerful voices that have organised rally’s at government buildings, presented evidence to TD’s and the public and organise an annual Lyme disease conference incorporating presentations from specialist doctors and researchers from around the world. I am truly in awe of their relentless determination, passion and drive even whilst battling illness themselves. They may be down but they still have so much fight left in them. They are true warriors fighting for every Lyme disease sufferer out there and as horrible as it is to say this, future Lyme disease patients. Lyme disease unfortunately is on the rise worldwide and is something we need to tackle head on as I would not wish for anybody to go through what I have and continue to experience.
Lyme disease in the media
It is not unusual for the vast majority of people out there to be familiar with the term Lyme disease especially with the recent stories from high-profile people adorning the pages of glossy magazines and newspapers. The likes of Yolanda Foster (Gigi Hadid’s Mam), Kris Kristofferson, Ally Hilfiger (Tommy Hilfiger’s daughter), Avril Lavigne, Kelly Osbourne (Ozzy Osbournes daughter) and more recently Shania Twain being amongst those who’s lives have been impacted by this debilitating disease. At the end of the day this disease is not limited to the third world or unsanitary conditions. It impacts people from all walks of life but high-profile people sharing their personal stories with the media is helping raise much-needed awareness. I for one will continue to use my voice, even from my sick-bed and when I am feeling that bit better will actively support the many Lyme warriors out there fighting for recognition. Come rain, hail or shine our voices will be heard!
Many thanks to the people who kindly gave me permission to use their images in this blog post. I am very grateful for your support and kindness.