As Lyme disease has become increasingly prominent in the media, more and more people are becoming aware of this illness. Lyme is considered the great imitator; it mimics the symptoms of other diseases and it is difficult to identify and diagnose.
The symptoms are non-specific and include fatigue, feeling unwell, muscle aches, joint pains and neurological issues to name a few. If you have fibromyalgia or ME/CFS these symptoms will be familiar. And that is because the symptoms of all three are very similar. So if you have ME/CFS or fibromyalgia, is it worth testing for Lyme disease?
Please note there is an update to this post at the bottom of the article
Why I’ve considered being tested for Lyme disease
I have fibromyalgia and CFS and I’ve never been tested for Lyme disease. But it is something that has been on my mind lately. Although I have never presented with the most well-known symptom of Lyme disease– the bull’s eye rash– it’s thought that as little as 40% of people infected present with this symptom. Therefore, the absence of a rash doesn’t rule out Lyme disease.
In my case, I have been around dogs and have therefore spent time in the countryside and in wooded areas. This means that I have potentially been exposed to tick bites. I read a statistic that said up to 50% of people with Lyme disease are unaware of ever being bitten and that’s worrying.
What if I have Lyme disease and I just don’t know it?
Other fibromyalgia and ME/CFS patients have tested positive for Lyme disease
I know I am not alone in thinking about testing for Lyme disease. In fact, I know of a handful of other bloggers with fibromyalgia and/or ME/CFS who have decided to go private with their health care and have discovered that they do in fact have Lyme disease. For some, this follows having negative Lyme test results on the NHS.
This, of course, isn’t to say that every patient with fibromyalgia and/or ME/CFS will receive a positive Lyme diagnosis. But, I’d be lying if I didn’t say it’s been playing on my mind even more since I’ve spoken to these bloggers. I have seriously considered going down the road of having Lyme testing done.
Private testing for Lyme disease in the UK
From speaking to others, I discovered that private testing for Lyme in the UK can be done through Armin Labs in Germany or at a private medical hospital in Hemel Hempstead called Breakspear Medical. I have gone as far as to contact Armin Labs to enquire about Lyme testing.
After your initial enquiry, they send you out patient questionnaires and based on this, they will follow-up with a recommended list of tests they suggest you have. If they are recommending a lot of different tests (there are numerous co-infections that can be present alongside Lyme), they rank them in order so you know which are going to be most worthwhile. They also send you a price list so that you can see exactly how much each test costs.
They do not offer phlebotomy services and so you need to arrange to have your blood drawn to send to them. People I have spoken to have had their blood taken at their GP and have then arranged for a courier to send them to the lab.
If you want to know more about Lyme testing in the UK, Spoonie Sophia has a brilliant post about being tested via Armin Labs and Rhosyn is documenting her diagnosis and treatment at Breakspear on her YouTube channel My Chronic Life.
Why I have decided against pursuing testing for Lyme disease right now
Unsurprisingly, having testing done privately is expensive. This is one block for me but it’s not the only reason why I have been hesitant about having the tests done. The truth is, if I have Lyme disease, I have had it for years.
I mentioned above that testing for Lyme disease is difficult and this is because the tests available are unreliable; it’s 50/50 at best. Some are better than others but a negative test result doesn’t always mean that you don’t have Lyme. This is why some people who had negative results previously, go on to have positive results at a future date.
The longer you are ill, the more difficult it is to get accurate test results
Acute infections are much easier to detect than chronic infections. This leaves me questioning if it is worth investing money in getting tested. Would I be any further forward as a result? Or would I find myself continuing to have symptoms while I am presented with negative test results? I just don’t know the answer to that.
I have also questioned whether anything would change in my approach to treatment should I test positive for Lyme. I think this is the main reason why I have been hesitant over testing. At the moment I don’t know whether or not I have Lyme disease but, either way, I think I would want to continue with herbal therapies.
I have slowly been getting better regardless of knowing
The herbal supplements I take are formulated to not only help with fibromyalgia but also Lyme disease. Although it would be good to know exactly what I was dealing with, I’m not sure if I would want to take more invasive treatments if I did test positive for Lyme.
Herbal therapies seem to agree with me and have helped me thus far. It’s just a long, slow road. The idea of antibiotics scares me if I am honest and I don’t know enough about treating Lyme disease at present.
My only sticking point is that I feel it would be good to know if I was dealing with any co-infections, as this could be what is preventing me from getting well. And knowing for definite would potentially mean I could take additional herbs or treatments to specifically target them. Although I’m not even 100% certain about that to be honest.
Knowing what co-infections to test for feels like a bit of a minefield, though. As I was presented with so many tests from Armin Labs, it kind of feels like a stab in the dark deciding which tests to actually have done as I couldn’t afford to do them all.
Maybe something for the future
Testing for Lyme disease may be something I look at again in future but for now, I’ve decided against pursuing it. Whether that’s right or wrong, I don’t know. It’s just how I feel about it at the present moment, though this could change.
It feels too overwhelming to go down this road alone. It would be different if I had a doctor saying to me they thought it was a good idea to be tested but, right now, I just feel it’s a lot of money to invest in a lot of what-ifs.
Have you ever considered being tested for Lyme disease? As always, let me know your thoughts down in the comments below and, if you would like to, you can click the image below to pin it to Pinterest.
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I felt much more confident to move forward with Lyme testing knowing I had a doctor behind me to help guide me through the process. Since learning I have Lyme, I have made some forward progress and I am glad that I tested.
If you are reading this and you currently have a fibromyalgia or ME/CFS diagnosis and you are questioning Lyme disease, please know that I do think testing is worth doing. However, please also keep in mind that there are limitations to testing and no test can rule out Lyme disease.
Unfortunately, a negative test does not always mean you do not have Lyme. Therefore, in my opinion, having an experienced doctor behind you who is aware of Lyme disease is also essential.