It’s obvious from talking to a few people that hardly anyone understands what having chronic Lyme disease means. Â This is not surprising as I barely knew myself until a few months ago â€” but I have educated myself through a lot of research and speaking to my specialist doctor.
I’m going to try to attempt to describe what this is all about and what I am going through, in the hope of spreading understanding. Â Make no mistake, I am not looking for sympathy, just for people to understand.
What it is
Lyme is an evil and clever bacteria called Borrelia. Â It uses resist and evasion tactics that any SWAT team would be proud of by hiding in muscles, bone, cartilage and crosses the blood-brain-barrier to hide deep in brain tissue. Â It also changes form when under attack and builds itself a wall to resist antibiotics.
This is NOT a 30 day antibiotic course disease, it takes months and often years to eradicate.
What it does
Lyme is often called The Great Imitator. Â It has so many symptoms that unless they are taken as a whole it’s incredibly easy to misdiagnose. Â And sadly that is what is happening across the world. Â I recently heard that 80% of patients diagnosed with M.E. who had a test for Lyme were positive for it.
Here’s a selection of my particular symptoms, but this is by no means exhaustive:
- Extreme fatigue, with aching muscles and no energy
- Bone and joint pain with stiffness, often misdiagnosed as arthritis
- Many, many neurological symptoms: forgetfulness (I sometimes fail to recall the name of someone I’ve known most of my life), poor concentration levels, massive headaches, nausea, faintness, anxiety, depression, impulsiveness, mood swings
- Muscle twitching
- Blurry vision and “floaters”
- Pink eye
What is a co-infection
Almost everyone who has Lyme also has a co-infection. This is additional bacteria that are contracted in the same tick bite that delivers the Lyme. Â I have something called Bartonella which is responsible for some very nasty symptoms, one of which is life-threatening:
- Burning in feet and foot pain (often misdiagnosed as plantar fasciitis)
- Swollen, painful lymph nodes
- Skin rashes
- Heart problems, pericarditis
The last of these is one of my biggest problems and the reason I am not travelling for work right now. Â Pericarditis is a swelling of the pericardium, the sac around the heart. It also traps fluid which is known as a pericardial effusion. Â This is a serious issue – if the fluid becomes too much it prevents the heart from beating efficiently and eventually makes it stop.
This condition is responsible for missed beats, palpitations and extreme pain. Â When I say extreme, I’m talking nothing like I have experienced before. Â The pain and palpitations will come and go at random and when it kicks off I feel the blood draining from my head and I have to lie still for anything from 15 minutes to 4 hours or more, before it goes away.
What is the treatment
There are many strains of the bacteria and treatment is somewhat of an art as much as it is a science. Â As I previously mentioned, the Borellia will shift form. Â Its main form is a spirochete but it also takes a non-cell wall form (cell walls are what antibiotics work on) and a dormant cyst form. Â All of these forms have to be taken care of to ensure it doesn’t come back.
The treatment I am on is a variety of anti-malarial, antibiotic and herbal supplements.
The treatment is worse than the disease
That’s right – the treatment makes everything worse. Â Much worse. Â As the bacteria die off, they dump endotoxins into your blood stream which triggers many things:
- Exacerbation of existing symptoms
- Flu-like symptoms with huge headaches
- Pain, pain and more pain
This is called a herxheimer reaction, or herx for short.
I have to cope with this by constant detoxing. Â I take a few different detoxing supplements and have to drink in the region of 4 litres of water a day to flush my system out. Â I have learned that when I am experiencing a herx, I become a zombie and cannot function at all.
In addition, I am completely intolerant to alcohol, I will get an awful headache within 5 minutes of a drink. Â Life and soul of the party, me!
I am hopeful that I will resolve everything eventually but I know it will take me personally another year or two before I am better. Â In the meantime, I feel like something is stealing my life away from me, but I have to remain strong. Â I have a family to take care of.