Am I Going Mad? By Peter Hill

An Insight into my Personal Journey with the Psychiatric Aspects of Lyme Disease

Why am I feeling this way?

This will always be the first question we ask ourselves no matter what ails us. We may need the reassurance of someone we trust to tell us what it is that is wrong with us. This is why we look towards the medical profession to supply the answers and provide the cure.

Under normal conditions we take the advice of our doctors and we not only find answers we also receive treatment that brings us relief and cure. Unless we are fortunate enough to display the classic EM rash and have a knowledgeable GP treating us then Lyme disease definitely falls outside of normal conditions. Even when we find the precious gem that goes under the heading of a Lyme Literate Medical Professional there is no guarantee that any treatment they provide will work.

By the time we have or get a diagnosis of Lyme disease we are already under the influence of Borrelia burgdorferi senso lato ( that is all the Borrelia pathogens that cause illness in humans).

The first six months of my journey were the hardest, if the physical symptoms of the disease were not bad enough; the psychiatric symptoms meant I was gradually losing touch with who I was. It got so bad that I even had myself committed to a mental hospital for observation just in case I was going mad. I had periods where I lost control of my emotions; I could be euphoric one moment and sobbing my heart out the next and all for no apparent reason. The worst moment during this period was when I struck out at my wife, we have been married for over 40 years and I am shocked and horrified to this day that I could have done such a thing. It was just a glancing blow but it could have been so much worse. I called the police and had myself taken away to protect her. We are still happily married, however, I have spent the past 4 years trying to understand how and why I could behave in such a fashion, this is what I have come up with.

Apart from the physical symptoms; there are also the psychiatric and psychological symptoms too. These are perhaps the most alarming to us because they fundamentally change our persona and how we see ourselves. We sometimes have the momentary ability to recognise the changes in our behaviour and become so frustrated that we seem to have little or no control over it. This is very scary to us and what is even more scary and deeply frustrating is that when we try to explain this to those in

whom we place out trust, they fail to understand. What complicates this even more is when there seems to be little understanding of the condition that is causing these symptoms and therefore we are often get misdiagnosed and treated inappropriately which can in fact be more harmful than be of benefit.

So how does Lyme Borrelia do what it is doing?

Lyme Borrelia is a living organism and like any living organism it’s first instinct is to survive. In real terms the life cycle of Borrelia is around 30 days, however, in terms of its genus it is millions of years old. It has adapted over that time to become one of a class of super bacterium that possess the properties to manipulate their environment in order to be so successful and survive. The symptoms we show because we become infected are as a direct consequence of their survival.

When we display physical symptoms we often attribute those symptoms to a localised areas in our bodies; simply because that is where we perceive them to be. In truth this might not necessarily be the case. The clue is in the word perceive or perception. It is our brains that form perception from the sensory information it receives from our other senses. Touch, taste, smell, hearing and sight.

Lyme disease is called the great mimic because it can produce symptoms that are so similar to those of other conditions. How does it do this? The clue to answering this comes from Bb’s ability to manipulate its environment. There is one organ of our body that has direct influence over the body’s environment and that is the brain.

The question you may ask is, ‘Is my brain infected? ’ The answer to that is almost certainly yes in the presence of symptoms associated with the disease. I will now endeavour to answer the question ‘ How does it do it?’

The brain is a very complex organ best described as a super computer, with neural pathways in place of circuitry and biological /chemical interactions rather than electricity. If you poured water onto a computer circuit board the most dramatic effect would be to short that circuit and the computer no longer works. If you removed one of the components it might not work properly. The brain is a lot more complex than that; so it might not be a good simile, however, I’m sure that you can adapt the basic principle after all that is what the brain is very good at when it functions properly.

The trouble is when we get Lyme disease we do not always have the ability to think clearly. The reason for this is because Bb has created a chemical imbalance within the brain. The physical presence of the bacteria can cause neural pathways to malfunction, this can have knock on effects as it could induce the body to produce more hormones/endorphins/vitamins than it actually needs or alternatively stop the production altogether. This will ultimately cause us to display symptoms because our body is showing signs of distress: it is getting too much or too little of what it needs in order to function properly. When it comes to the brain and how it functions the symptoms become even more complex because the brain not only deals with maintaining our body’s functions but also how we think and feel.

Our emotions are the most visible way to know that we are being affected, we ourselves may recognise this is happening when we no longer have control over them. Mood swings are generally controlled by the production, release and use of endorphins and hormones. Let us have a look at a few of these emotional releases.

Anxiety is a prime example. Anxiety is an emotional response to stress and has its origins back in the days when it was purely as a fight or flight response. It was and still is a defence mechanism. When our bodies are put under that kind of stress we release large amounts of adrenalin. We can feel this as increased heart rate, our blood pressure increases as does our metabolic rate in preparation to fight or flight. So if the presence of Borrelia causes too much adrenaline to be produced then we may well feel anxious and in the extreme; experience panic attacks. The same can now be said for all of our emotions. What complicates matters is; we as human also have higher thought processes which set us apart and above other creatures. These processes give us our personalities, our imagination and creativity etc. No one knows exactly how and why we think the way we do. So it would be impossible for me to say how Borrelia affects the way we think, yet we can safely assume that it does. We can recognise when this is happening when we feel that we are not ourselves or when others tell us we are acting strangely.

The feelings of happiness and sadness areusually triggered as the result of an emotional event and involve the production and use of multiple endorphins, whereas euphoria and depression are as the result of an over production or a lack of endorphins or hormones. This is why we are often prescribed uppers and downers…uppers when we are feeling depressed and downers when we are in an anxious state. All to bring back into balance. The problem with Lyme disease is we can often go from one state to the polar opposite as quick as it takes to say it, therefore, taking medication for these conditions in Lyme disease is very risky with potentially disastrous and life threatening consequences. Knowing this is one thing but how can we overcome this?

How can I get better?

During the period where we are not really ourselves and in control of our thoughts that is the hardest time for us. Our emotions are all over the place and we simply cannot think straight, to make matters worse the environmental factors can compound and exacerbate the situation even more. The environmental factors I am referring to are those such as not having a supportive family, not having a supportive GP, the day to day pressures we have to face even before we got sick. Perhaps the most debilitating of all is our sense of isolation. In an ideal world you would want to remove all of these pressures before you can start on your journey to getting better.

We do not live in an ideal world so we have to do as best we can and that first step begins with getting into the right mindset. While we are in a state where we don’t have control of our thoughts or emotions we need to create comfortable distraction/diversion and this will be your mindset. Every time you start to dwell on the fact that you have Lyme disease, try and find a distraction immediately. The more you do this, the more of a sense of control you will have. If you continue with the mindset that you have a disease, you may end up feeding the Borrelia as some believe that they feed off our emotions as well as fuelling them. This can be a vicious cycle.

Creating distraction and strengthening your mindset will allow you to regain some control over your emotions.
So let us start with regaining control of our emotions:

Under normal conditions we would probably become depressed because of environmental factors. Depression becomes a problem only when it is a continual or a long lasting state. If it is a state that is intermittent then chances are it will not need addressing by medication or by making changes to your environment to relieve that state. Depression can be relieved by inducing the bodies natural endorphins/hormones such as oxytocin the ‘cuddle hormone’ which makes us feel physically and emotionally connected to a loved one. This may seem an unorthodox approach , however, if depression were induced by Borrelia activity and not through environmental factors then inducing the production of oxytocin should counteract the effects of the reduction of other endorphins/hormones. The complex nature of the hormone oxytocin and how the body uses it, means it is the beginning of a process that induces the production of other endorphins/hormones too.

In a way anxiety is the opposite of depression so the last thing you would want to be inducing is oxytocin. However, just to emphasise and give credence to what I have been saying, just imagine this scene: you are cuddling on the sofa with a loved one and then suddenly a knock at the door or a phone call startles you. What is happening within the body is the oxytocin is suddenly being overwhelmed by a rush of adrenaline…the fight or flight hormone. In essence what you would be looking to do would be to lower you level of adrenaline. The body can be induced into producing endorphins that will do this. Serotonin and dopamine are two that can lower your adrenaline levels and make you feel more relaxed. Chocolate can induce the production of both serotonin and dopamine. A relaxing hot bath can do the same. A gentle massage will have the same effect and for those of you who have small children cradling your infant…. your mothering instincts will kick in automatically to produce all of the right kind of hormones that will create a better environment for your child. Anything that makes you feel good will help reduce your adrenaline levels. Most of the other emotions we display are somewhere in between anxiety and depression as they are the extremes.

This I have found; manifests itself after a stressful event; like going to the doctors only to be fed like a rose and told you are blooming when you actually feel like a dandelion and everyone is attacking you with weed killer.

Irrational thoughts are a bit like paranoia, really, except that you can go around blaming everyone for every thing, make mountains out of molehills. Most of the time irrational thoughts are spurred on by the other disturbances but sometimes they can manifest for no apparent reason. Some of the most scary are irrational suicidal thoughts.

Aggression will be the hardest of all to deal with as this symptom is perhaps the most explosive in its nature. It can manifest and then disappear as soon as it came. All you can do is look for triggers that might kick off an event and distract yourself before an event.

I am so lucky that I have a psychiatric nurse that helps me deal with paranoia, irrational thoughts and aggression. His name is Chester and he is my 15 month old Staffy. Chester has taken over form Deacon who at 15 years old, struggles to remember he is a dog.

Delusion is perhaps the strangest of all the disturbances because for me it often manifests itself after long periods of creativity…you believe you have just written a poetic masterpiece then realise days or weeks later it should have been written on toilet paper…at least then it would have some use. There is another side to this too….there are moments during creativity that you can write some quite inspirational stuff that you perhaps never thought you were capable of…of course you may not be aware of this until someone else actually tells you; by that time you will have come out of your delusional state and self doubt will have set in…it is only when you are told ‘ This is good’,  that you say, ‘thank god I did not flush it down the toilet’. I don’t really have anything to help with delusion and who knows, I might go on to write a best seller!

I do hope that sharing my personal encounters and what I have learned will help you. I will always be there in the Online Community to help answer any questions you might have.

Get better soon,
Peter Hill