When you are sick, and I mean chronically and long-term sick; a name and a diagnosis matter enormously. Never more so I believe than in the murky, controversial world of CFS.

You may very well have Chronic Fatigue, and all the associated symptoms but does that really mean that you only have CFS?

Or could you infact have both CFS and Lyme Disease?

Indeed, are you open to considering that they are even one and the same thing entirely for many people?

 

CFS is Lyme Disease

Don’t get me wrong I don’t mean to take CFS lightly at all, and I acknowledge that there are many sub-sets which further complicates matters, but in reality CFS is a syndrome and has often unfortunately become an umbrella term. It a category in which you are often placed (and left) when the doctors do not really know what is wrong with you. Or worse, when they believe nothing is really wrong with you.

And that attitude is still very prevalent today sadly.

Shakespeare may very well be right…

For that which we call a rose by any other name would smell as sweet.

Although perhaps a fairer description in this case would be to describe the smell as more sour than sweet.

Certainly is is true that regardless of the name itself, this illness remains unchanged at its core, as does your suffering. But there is a big big caveat here – for the name – changes everything in terms of your chances of treatment, recognition, sympathy and truth.

Knowledge is always power. It is never good enough to be told that you have a serious condition without being given any further help. To be left and forgotten as so many of the sick have been for decades is beyond wrong. Yet the real sadness is that this truth and reality isn’t even shocking news anymore.

It is the way it is and the way it has been for the duration of my 20 year personal experience. Although, I will say that there is a hint of change in the air just very recently amongst some of the more enlightened medical professionals I have seen. A very subtle yet sweet scent of progress and evolution – even if only within mindset.

CFS is complex and I won’t begin to unravel it here. It is multi-layered and as in every disease there are always many factors and levels at play. Interwined and unique. There is always much self-healing work to be done on all levels (and I highly recommend this.) But what if you have committed to all this, and nothing much has changed after 20 years? Do you continue to apply the exact same principles or do you move forward in your research and face something else?

To do the same thing over and over is the definition of madness.

Albert Einstein.


Here is the biggie I now ask you?

Have you considered Lyme Disease in your picture?

Or, like me, have you resisted it for so long and denied the possibility due to the complexity of it, and lack of remembering a bulls-eye rash or a tick bite?

I’ll give you a little heads-up and suggest that once you really look into the link between CFS and Lyme Disease, and read the words of the main players (many of whom prefer holistic treatment protocols by the way) your mind starts to boil and …boggle. Clarity zooms in so fast your head swims. Shock hits as you read your life story in their words.

That moment when you just know. It hurts in your chest.

How did I not realise this?

Mild curiosity gives way to full blown subject immersion.

You dig deeper than ever before in a world you never even knew of yesterday.

Fear and hope entwine and dance together precariously in front of your eyes.

Everything has just shifted.

In a way you never thought possible this far down the line.

You want to cry, You want to laugh.

This is where your next chapter begins.


As I write this post I have a sense that today could be a landmark day in the CFS and Lyme Disease world. A wave has been gradually building this past year. It may have been quiet, slow and subtle but it has been present none the less.

2 years ago I had never heard of Lyme Disease.

A year ago I was still dismissing it despite a tug in my heart – sorry I should have listened. I resisted even when my close friend (who is in a similar position) was giving me all the facts. She even mentioned the link between the immune system’s inability to fight Parvo Virus when Lyme Disease is present.

Still I wavered…

Why?

Because the truth is that this is a difficult road and I didn’t want Lyme Disease. I didn’t want this all to be down to some little critter who stole much of my life with just a bite. That just seems too unfair.

I know I’m trivialising it all. Health is a massive complex circle made up of emotional, physical, environmental, genetic, lifestyle and other factors. But this tick (or flea perhaps) played a vital role. It likely kick-started the avalanche. Once the snow began to tumble it took on a frightening speed of destruction and Lyme Disease turned into Late stage Lyme Disease where the repercussions are as serious (if not more so) that the initial tick infection itself.

And that is why I hesitated for a while. Because treating Lyme from here is not the same as treating lyme at the start. That has a good prognosis. Remember that.

But it is always better to face the truth. To know what we are dealing with. I am very likely dealing with Lyme and co-infections now. Interestingly I since learnt that Parvo Virus is considered a co-infection too – meaning the tick may have given this to me too.

Today, a National TV programme documented the case of Lyme Disease in such a way that if the media and public backlash doesn’t begin right now I doubt it ever will.

Live on air Dr Chris Steel (from ‘This Morning’ strongly) backed up the suspected link between CFS and Lyme Disease. This may seem trivial to many overseas, but here in the UK this is pretty huge. Our system has a problem with even a hint of lyme. I don’t know why but I suspect it is highly politically (and financial) in parts. Regardless, if you have Lyme Disease in the UK it is very unlikely any doctor will even mention the possibility to you let alone test or treat you. And that is before we even begin to talk about the inaccuracy of our testing.

I sincerely hope this is the start of a change because it doesn’t need to be this way.


I’ve been holistically, medically, spiritually and faithfully treating my body in every way possible for many years, and I don’t regret any of it. It has all been invaluable and important. It still is. But I knew deep down I was swimming against a tide, and no matter how much I improved my swimming strength and technique the waves were not getting any smaller.

I now can identify the wave as a tick bourne bacterial infection(s) which needs treatment.

I am working with a doctor overseas but it is not simple or cheap. For many (like myself) fund-raising is necessary even though it wasn’t something I was comfortable with to begin with.

Before I can even begin any Lyme treatment (which is hardcore and detrimental for many at the wrong time) I need to be much stronger, so at present we are still dealing with this. My system is sensitive and doesn’t like much and we try to keep it all as gentle and natural as possible for this reason.

Treatment is particularly individual for late stage Lyme Disease as it is a disease which mimics many other illness’s such as CFS, Altzeimers, Parkinsons, MS etc. Or so the experts believe.

In the words of my current doctor

You have to start with the individual and not the disease.

So perhaps, from this perspective a name isn’t so important after all? But what is crucial is a clear understanding and picture of what is wrong, and a name (or true diagnosis) gives you that.

If you have been treating CFS for years and you’ve explored all aspects of healing and treatment and are still sick I would suggest listening into your heart and asking if it feels the pull towards another trigger?…. And then explore the heck out of it.


I would love to hear if this has triggered something for you? At the very least I really hope you watch the video and pass this information onto anyone for whom it may be relevant. You could be helping repair a life.

And if you want to check out my fundraising page here that would be much appreciated.

With Love + WishesCarly xxx

Share this post if you liked it. Thanks xx

4 Comments on CFS and Lyme Disease: What’s in a name?

  1. jules
    September 29, 2015 at 8:20 pm (2 years ago)

    Really well written Carly. Very proud of you, as always. Xx

    Reply
    • Carly
      October 7, 2015 at 12:33 pm (2 years ago)

      Thanks Mum. Love you xxx

      Reply
  2. Jenny Bullows
    October 6, 2015 at 8:31 pm (2 years ago)

    Beautifully and bravely written my talented friend. Been here with you since the start and walked along with you in wonder… So hopeful for you that this path brings answers. Much love xxx

    Reply
    • Carly
      October 7, 2015 at 12:32 pm (2 years ago)

      You certainly have my lovely. Thank You for your continued support and for never ever doubting me. That has always meant a lot more than you know. Thanks again for your lovely words. Love you xxx

      Reply

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