Back to the original purpose of my blog for today:
to help increase awareness of Lyme disease, especially in the UK
Yesterday the Herald (a Scottish newspaper) featured this article:
"Scientists and doctors unite to beat tick-bite disease"
The article is pretty short and to someone who has not spent hours, days, weeks, and months of their life researching, reading, fighting for treatment and battling Lyme disease on their own, it probably doesn't seem like such a big deal. Basically, the headline says it all - scientists and doctors are going to develop guidelines to treat a disease that is increasing in prevalence... doesn't sound like anything ground-breaking is going on there...
But it is!! Believe it or not, there are NO official guidelines on how to treat Lyme in the UK. Many doctors don't really know about it (my own GP, when I first mentioned Lyme disease and antibiotics said "I don't know if you use antibiotics for Lyme" as he reached for a book). I also know a friend at home who has had two positive blood tests for Lyme (in itself a rarity, as getting a positive blood test is dependent on timing and the body's immune response) and was referred to a homeopath and a psychologist. That's right... that's like testing positive for MRSA, or TB and being sent to a homeopath and a psychologist. Bacterial infections are treated with antibiotics (or anti-microbials) - something that kills the little buggers. If you could talk them out your system, I'd have been cured long ago!
Not only is the announcement significant, but the details in this short article are reported as clear facts about Lyme. Again - that's amazing. Prior to reading this article, the only place many of these pieces of information were discussed was in the context of the 'Lyme debate' - the use of the word 'chronic' in reference to Lyme disease is extremely controversial, but the Herald states what Lyme researchers have known for a long time - catch it early and one course of antibiotics usually prevents the infection spreading throughout the body, and therefore prevents severe illness; but if it is not caught early, it can affect major organs, cause chronic health issues and has even been attributed as cause of death (many more times than the one example mentioned in the article).
The article also states that it can be passed from a pregnant woman to her unborn child. Again, this has been controversial and is generally denied by mainstream media/ infectious disease specialists; but there are many documented cases.
It also states that Lyme can mimic chronic fatigue syndrome symptoms and those of MS - hopefully paving the way for earlier Lyme testing in anyone presenting with symptoms that fall under the CFS umbrella. I do not know if this is still the case, but NICE (National Institute of Clinical Excellence) did, in recent years, issue specific guidelines which recommended AGAINST testing for Lyme in patients with CFS - so, again, to have that information reported as facts by a mainstream UK broadsheet is a breakthrough for Lyme patients.
That's only some of the symptoms of Lyme. For a more comprehensive list and great information, check out the two UK charities who have worked so hard to raise awareness and educate people about Lyme: LDA and BADA-UK.
I'm not naive enough to think this is going to create a magic response, present a cure and 'fix' everyone dealing with Lyme. Nobody knows how to do that. But simply having this information out there makes it clear to me how much progress has been made in the UK in the last 6 years - Lyme has gone from something virtually unheard of to something people are now aware of, and medical professionals and scientists are accepting they need to deal with it. That on its own is a breakthrough.
What can really help is sharing the article - the more people who are aware of Lyme, the fewer will become severely ill, as time passes and allows the spirochetes to infect multiple areas of the body. If you read the article, share it with one other person - if everyone does that, awareness spreads even faster.
And let's hope the guidelines formed by this committee - which will include Lyme patients too - will be forward thinking, educational, and beneficial in treating and preventing the spread of Lyme disease.
In order to demonstrate how Lyme can affect people, I'm going to post some pictures/ illustrations from Pinterest that really do explain how Lyme (and other 'invisible illnesses') can make people feel. They're not my usual optimistic, inspirational favourites, but they are important in illustrating how serious Lyme disease is, and how people feel and cope with systemic disease.