I began coiling in February 2018. At that point I was basically bed bound, with no life to speak of. As a 28 year old, I struggled immensely with knowing that this illness has stolen what should have been some of the best years of my life. The times when I felt well enough to go out and do something, fledgling friendships faded as I just wasn’t able to maintain them. This illness can be so isolating – like looking through frosted glass at a life unlived.
The first 6 months of coiling were hell. The herxes seemed never ending, and at times I wondered if I was just stirring up layers of the infection for no reason. Additionally, when I began coiling, there was no readily available information about how to design a protocol and what to expect. I gritted my teeth and experimented.
Around the 6 month mark, it was like finally stepping out of the fog and into sunlight. I finally began to see some small, yet significant, improvements. At the 9 month mark, I’ve seen a gradual but steady improvement, along with a gradually changing symptom picture.
Coiling Time & Herx Length
I’m now up to around 6-8 minutes per session. Once I’d hit the 6 month mark I tentatively began coiling my upper back and head. I’ve stuck to around 30 seconds in those areas as I’ve had some powerful neurological herxes.
The herxes vary but the average duration is around 3-4 days. This is worlds different from the start of treatment. The main difference I’ve noticed since coiling my head is that many of my early neurological symptoms have come back with a vengeance. This includes neuropathic pain (tingling, burning, stinging pains) along with intense psychological symptoms, including anxiety.
A quick aside on psychological symptoms: It’s well understood that Lyme can have an impact on our mental health and manifest as anxiety, depression, rage, obsessive thoughts and more. Part of looking after ourselves is looking after our mental health. If at any point you feel overwhelmed or have thoughts of harming yourself, please contact Mind or The Samaritans. Don’t struggle alone, and remember there’s no shame in getting a helping hand - either with therapy or medicine.
Crashes
Many people with Lyme are also diagnosed with M.E. (Chronic Fatigue) and Fibromyalgia. These diagnoses are what doctors give you when everything else has been ruled out – so they aren’t really conditions that can be diagnosed, but rather they are syndromes. Syndromes are typically a collection of symptoms that don’t have any other cause. Some of the main overlapping symptoms of M.E. and fibromyalgia are profound, incapacitating fatigue, sore throat, swollen glands, muscle/joint pain, impaired memory/concentration & bowel complaints. Sound familiar?
Folks living with M.E. & fibromyalgia (and Lyme!) experience crashes. In medical terms, it’s called Post Exertional Malaise. Essentially, it’s an increase in fatigue and other symptoms after exerting yourself. Managing your energy budget reduces the number of crashes you have, but most importantly, crashing is an excellent indicator of your healing journey.
The crashes I’d experience after any activity or exertion has lessened so much to the point that they’re not the huge daily consideration that they once were. Whilst I’ll often find myself more fatigued the day after something out-of-the-ordinary, such as an afternoon out, I no longer find myself bed bound for days at a time. When my Lyme infection was untreated and in the early, gruelling months of coiling, I could crash for days after as little as putting a few loads of laundry on. My tolerance for physical exertion has increased exponentially. Am I at the point where I can go back to the gym? Not yet. Do I believe that I’ll get there? Absolutely!
My Abilities
My stamina for normal activities is still fairly low in comparison to a healthy person, in that I’m still not living a ‘normal’ twenty-something life. Rebuilding my social life takes some planning. I’ll often know that an activity or outing is all I can handle in any given week – but it’s one more activity a week than I managed a year ago! At the beginning of November, I managed to go out for small activities (like coffee or popping to the shops) five days in a row, which was a huge milestone for me.
Immune Function is Returning
Some of you may have noticed that my 9 month update is coming a little late – and I’d planned to have this edited, proof read and uploaded for mid-November. Unfortunately, I caught a viral illness for the first time in years. However miserable those 3-4 weeks may have been, I was also quite happy about it.
Many people with chronic infections don’t exhibit normal cold & flu symptoms. This is because our immune system is busy focusing on what it deems to be the greater threat, so when a virus invades our body we don’t mount a typical immune response. Remember, all those horrid cold & flu symptoms are actually caused by our immune system attempting to kill the virus. Runny nose, sore throat, inflammation – they’re not caused by the virus itself.
So whilst I was in bed experiencing the first cold in years, I was also doing a regular happy dance that my immune system was able to respond normally.
What To Expect
After 9 months of gruelling treatment, I’m finally starting to get some of my life back. Looking back to the early months of treatment, I wish I’d known that this was coming. At the time, there wasn’t a blog like this and I certainly didn’t know anyone who was treating with a coil machine. I just had to ride it out and hope for the best.
When you first begin coiling your upper back & head, expect some intense neurological herxes. This is why we recommend only coiling your lower body for the first 6 months. This will reduce your overall bacterial load, allowing you to then focus on specific areas. Even though you aren’t coiling your head in the first six months, you will see a reduction in neurological symptoms due to the reduced bacterial load.
I’d been virtually bed bound for a very long time before beginning my treatment journey. Now that I’m able to start having a social life, I’m finding that I have to overcome the mental hurdle of just not being used to it. It’s been a long time since I headed to the pub in the evening, for example. Sometimes, I find myself reluctant to go, not because I’m too fatigued or have pain, but simply because I’m used to getting into bed at around 9pm!
Chronic Fatigue is a huge part of managing a journey from Lyme Disease, and I’d love to hear from you about how you manage your energy budget. Let me know in the comments below!
