In our last article, “The Difference Between Tiredness & Fatigue” we touched upon how Lyme is often misdiagnosed as Chronic Fatigue Syndrome or Fibromyalgia. Whilst this can be frustrating and downright depressing, there is a silver lining when you receive alternate diagnoses.
Getting the NHS to acknowledge Lyme Disease in any significant way has been a long struggle. If it weren’t for charities like Lyme Disease Action tirelessly campaigning, we would be in a much worse state. The new NICE guidelines released in 2018 are an improvement on the old guidelines, but there is still a long way to go. There are far too many people living with chronic Lyme who desperately need validation, support and effective treatment.
As it stands, Lyme Disease is recognised in the initial, acute stage after being bitten. There’s good evidence that if the 28-day course of doxycycline is started early that it can be effective. With the tireless efforts of charities and organisations to raise awareness of Lyme, it is hoped that more people are recognising the signs early and obtaining antibiotic treatment.
Nevertheless, this still leaves swathes of people suffering the long-term effects of this debilitating disease. If you’re lucky, you may receive a diagnosis of Post Treatment Lyme Disease, but of course, this depends on you having a positive NHS test as well as an agreed NHS diagnosis of Lyme Disease.
Post Treatment Lyme Disease
PTLD is a ridiculous diagnosis in the eyes of many people with Lyme. Let’s take a look at the symptoms:
- Fatigue
- Generalised Pain
- Joint & Muscle Pain
- Development of secondary autoimmune, neurological or arthritic conditions
It all sounds very familiar, doesn’t it?
It is very common for those with Lyme to go on to develop secondary conditions such as:
- Chronic Fatigue Syndrome
- Fibromyalgia
- Inflammatory Arthritis
- Autoimmune diseases: Lupus, Rheumatoid Arthritis, Sjogren’s, IBD
- Functional neurological disorders that are similar to MS in presentation
When rejecting these alternate diagnoses and pushing for recognition of Lyme Disease, patients are often labelled as psychologically unstable and recommended for counselling. Understandably, this causes even more distress.
I believe that most people need to go through a stage of trying to get a Lyme diagnosis, in part because having confirmation of the disease can feel like a necessary first step in treatment. I went through this myself. I was bitten, and after 3 weeks the bullseye rash appeared. I was fortunate enough to know that a bullseye rash was associated with Lyme and went to my doctor. The first doctor I saw literally laughed at me, gleefully telling me that it wasn’t Lyme Disease. What ensued was weekly visits to my GP pleading for antibiotics as my symptoms quickly progressed from the ‘summer flu’, to excruciating headaches, pain in my joints and heart palpitations.
Eventually, a GP prescribed a course of Doxycycline. I ended up in hospital the next day with what I now know as a massive Herxheimer reaction. In the following weeks I ended up in hospital another two times, both times with chest pain. Even after all this, the doxycycline was stopped after a mere six weeks.
I experienced some symptom reduction after the antibiotics ended, most likely due to the spirochetes being forced into cyst form. I decided to pursue the herbal Buhner protocol over the next 8 months. I achieved a degree of remission, although I never got back to 100%. 18 months after the initial bite, I had a massive relapse and the herbal protocol just wasn’t working for me anymore. At this point, we began researching coiling.
I have been diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, Connective Tissue Disease & Lupus. Having gone from a perfectly healthy woman to someone with so many health issues after an insect bite is frustrating. My health is slowly improving though, and I’m on the road to recovery.
My Relationship with my Doctors
When I stopped mentioning Lyme to doctors, I found that I was able to access varying degrees of support. The atmosphere switched from verging on hostile to open and friendly. Now, when I talk to doctors, I refer to my Lupus diagnosis. I quickly realised that the support I needed, like pain relief, flexible working and other prescription medication was readily prescribed to someone with Lupus, but not someone who has Lyme.
Using an NHS diagnosis can feel like a cop out, and the indignation we can feel at being ignored can be difficult to supress. But instead of fighting the tide, it can pay dividends to work with the system. For example, you may need to apply for a blue badge due to mobility issues. A local council would not consider Lyme Disease to be a qualifying condition, but Fibromyalgia and some autoimmune disorders are.
Similarly, there are times when pain relief is desperately needed in order to function. A GP would be highly unlikely to prescribe something like tramadol for Lyme Disease, but when you also have the very real conditions of Fibromyalgia or an autoimmune condition, pain management is an important part of living with a chronic illness.
The last thing I would want is for anyone reading this to think that I’m taking the side of the medical profession, which has caused untold pain to those with Lyme. However, by working with the medical profession you will be able to access a lot more support and care that could drastically improve your day-to-day life.
I’d love to hear from you – have you been diagnosed with alternate conditions by your doctor? What are they? Let me know in the comments below.
