Is it Lyme Disease or Fibromyalgia and ME CFS ?
Ever since CFS Unravelled was published, I have been contacted by people diagnosed with Chronic Lyme Disease wondering if they have really have Lyme Disease or Fibromyalgia Syndrome and Chronic Fatigue Syndrome.
Lyme disease is an infectious disease caused by at least 3 species of bacteria and usually results from a tick bite, although people are not always aware of the bites. Many but not all people develop a bull’s-eye rash around the bite site.
The illness is usually treated with antibiotics, but in some cases people develop chronic Lyme disease, although much of the medical fraternity does not recognise this condition. If that last sentence isn’t enough to spark the interest of people with ME/CFS and Fibromyalgia Syndrome, the list of symptoms will certainly start to sound familiar.
And so it is no surprise that they are often diagnosed with ME/CFS and Fibromyalgia, sometimes before their Lyme diagnosis, sometimes after.
But listening to stories of people that have recovered and people that haven’t, my view on the subject has strengthened over the years, because I keep hearing the same experiences told in different ways.
Because I didn’t want to “open a can of worms”, I have held back in speaking on the subject for some time, despite a wonderful interview I had with Katina Makris, author of Out Of The Woods.
But recently I had my own brush with a tick bite. After a day in the bush, I found a tag at the back of my head. Without thinking about it, I had grabbed it when suddenly I felt extreme pain spreading on my head.
Sure enough, I had the first tick bite of my life. And whilst normally removing them leaves you with nothing to worry about, I had of course triggered the tick to empty its contents deep into my scalp, causing an immediate and somewhat severe reaction.
Now I won’t bore you with the details, but I took appropriate precautions to treat the infection which in the coming weeks spread symptoms across my scalp, down my neck and caused my glands to go into overdrive.
But I figured, this must be a signal for me to finally share my views on the subject of Lyme disease, or more poignantly, CHRONIC Lyme Disease!
But before I do, so that we don’t have anyone upset due to a misconception, let me start by stating the obvious:
LYME DISEASE IS REAL.
Yes, the illness isn’t easy to diagnose, with many false positives and false negatives (some labs have been reported to have up to 70% error rates), but the bacterial infection is of course absolutely real.
And regardless of whether you have the characteristic bull’s eye rash or not, I have no problem believing that many people have Lyme disease and that much of their illness, their symptoms, result from this infection.
But here is my point.
Is the Lyme disease actually WHY you are sick?
“Well, of course”, you might say. And yes, there is no doubt whatsoever that Lyme disease can create terrible symptoms when the infection spreads, especially when it becomes chronic.
But WHY is it such a problem? Why does it become CHRONIC in some people?
Many people get tick bites, and they don’t get sick.
Many people get tick bites, get Lyme disease, and recover quickly.
Ask yourself, “Why would Lyme disease become CHRONIC in some people?”
What is REALLY the problem here?
Is it that we were infected with Lyme disease, or is it that we are not recovering from it? I would suggest, the real problem is the latter.
You see, I hear these stories all the time. Sometimes it’s Lyme disease, sometimes it’s glandular fever, sometimes it’s flu – the list goes on and on.
Not only do I hear about many of these infections triggering ME/CFS/Fibro, but I actually believe that these infections often thrive only because ME/CFS/Fibro is being experienced.
That is why I inevitably hear of so many people with chronic Lyme that have the same personal histories that we always see with ME/CFS/Fibro. And it is no surprise that we also see the same similar stories of recovery. Katina Makris’ story of recovery is a prime example of this.
Don’t get me wrong. I am not saying that Lyme disease is ME/CFS/Fibro. Some people get SEVERE Lyme disease and get SEVERE treatments that work and from which they consequently recover to regain their health.
But so often, Lyme disease becomes part of the wider experience of ME/CFS/Fibromyalgia which is why we then need to adopt a holistic approach that encompasses the root cause of ME/CFS/Fibromyalgia, as well as addressing the Lyme infection with treatments that are most relevant.
But so many people get a diagnosis of Lyme and feel this relief, that they finally understand WHY they are sick and they just need to treat the Lyme and all will be well, only to find that is not really the case. Because of course, CHRONIC Lyme can be notoriously difficult to treat, just like ME/CFS/Fibro – the connection seems clear – it is rooted in the immune dysfunction.
There are many infections this world throws at us, many of which history has shown even to be lethal, even in the masses. The question I always ask, WHY do some people survive and thrive and others not?
The answer inevitably has to do with health as opposed to disease! Whilst eastern medicine has long recognised this, the difference between health and disease is something which many people in the west unfortunately still don’t seem to understand (frankly I was one of them until I learned what I shared in CFS Unravelled). But change is happening and modern medicine is evolving and integrative medicine is changing how we treat many illnesses.
My view is this – CHRONIC Lyme disease is a result of poor immune dysfunction, often part of ME/CFS/Fibromyalgia. Hence it is a consequence of illness more than a cause of it. Yes, it causes much dysfunction and symptoms and needs to be addressed, but as a consequence of ME/CFS/Fibromyalgia. Like I always say “treat the cause, not just the consequences”.
What do you think? What is your experience of recovery from Chronic Lyme Disease?