Lyme awareness: Lyme is...

Lyme disease awareness

This year is proving to be a tough one. Treatment is working, but energy levels (& computer tolerance levels... eyes, concentration, headaches) are low.

A few awareness points for 2018:

Lyme symptoms can vary greatly from person to person. It depends on what areas of the body the infection attacks. Rather like when some people get a bad cold they end up with a sore throat, and others may end up with sore ears - we are all unique. This can make it especially difficult for doctors to diagnose, especially when lab tests are not reliable, and even moreso, when they are not done in the small window of time that *may* show an immune response to borrelia infection.

The list above is nowhere close to exhaustive - close to 200 individual symptoms have been linked to Lyme disease (see ILADS.org or lymediseaseuk.com for further details). 

However, imagine the list described, and imagine feeling all of that at once. Add on the worst hangover you can remember, and then imagine you ran a marathon too. You're close, but not quite there.

#LymeDiseaseAwareness

Lyme brain, 'pain scan'

As the saying goes, 'a picture is worth a thousand words' & this one didn't just make me think of that phrase; this picture felt like it jumped out of my screen: the perfect embodiment of the 'monster attacking my head'; its tangible horror captured in perfect detail. It was like staring at an image of my own, physical, pain.

For 12 years and 5 months now, I have suffered from almost constant headaches, something very common in Lyme disease, probably one of the most ubiquitous symptoms (many symptoms vary, especially with chronic Lyme disease - it adds to the difficulty in diagnosis when doctors are not familiar with it, and the patient doesn't recall a tick bite) - headaches are - I think I can say - universally experienced, and despised.  I have had good spells, where the headaches have dulled; but the worst, completely debilitating  headaches come when I feel the little spirichaetal buggers have rebuilt their army, regrouped, devised a new strategy, and start waging an aggressive full-on attack on my body again. When my headaches are at their worst, I have long describe them in these very words:

"It feels like giant hands are inside my skull, squeezing my brain, from the base of my skull, wrapping up and round."

So when I was scrolling through instagram this image, posted by a Lyme awareness group grabbed my attention:

(From 'inourshoesproject' instagram page)

Maybe it seems silly to feel so... connected, horrified, surprised... stunned?... at one image. But looking at this says so many things to me:

- That's my head!!
- I could have drawn that
- If you could photograph my pain, that captures every.single.detail.
- ... MY head!!!

...

But overwhelmingly, it says:
SOMEONE UNDERSTANDS... like really really 'gets it'.

I am incredibly sorry that someone does - and not just someone - I'm not sure where the image originated, it seems to have been shared on various Lyme sufferers' social media accounts.  If scans could show pain - that is a Lyme brain, in perfect detail.

 It is very common with Lyme, as with other 'invisible illnesses' that friends and family struggle to understand how ill a person is - often people 'don't look sick' and others have difficulty matching appearance with 'behaviour' (/symptoms) - to simplify.  We are taught to trust what we see, and we have difficulty when there is a disconnect there.

Images like this one, I hope, help people to understand a bit more, by providing a visual depiction of pain. We know that we cannot see every illness, but we understand the severity of some 'invisible' illnesses. There are still illnesses - and Lyme disease is one of many - where genuine awareness is still required, and increasing understanding can help with support, and be a positive factor in many ways.  


'Invisible' can be hard for me (& others) too. Nobody wants to 'look ill'; but everyone - healthy or ill; on a life high point, or facing major challenges - wants to be understood.... and it can be difficult when people rely on what they see over what a friend or family member may try to describe.

The best thing anyone can do for a friend - whatever they are dealing with -  is just to try to accept that only they feel it, and the best thing you can offer is your support. In some cases, it is appreciated more than you'd ever imagine. 


 May has been Lyme disease awareness month and my blog has been rather neglected - with good reasons. Cutting a very long story short, for now, in May I travelled back to the US, for treatment for a pretty major Lyme relapse; and also for critical treatment for my shoulder - treatment I still can't get at home due to the complexity of the injury, the new surgery, the lack of specific 'scapular physiotherapist(s)' & also the absolute impossibility of finding someone who knows about Lyme AND crazy shoulder injuries - and just as impossible, finding a team!

So April was spend getting stuff organised at home - hard right now, my health has really nosedived. May has been spent seeing all my doctors and therapists here, and making a plan.  Right now, it just feels so damn good to HAVE a plan!

Hopefully I'm 'launching'!

Lyme disease: an amazing article

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.

http://www.pinterest.com/gmun22/outofthelymelight-blogspot-com/