Photography credit: Carmen Marxuach
Photography credit: Carmen Marxuach

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.

UPDATE BELOW…

Pin for later:

Do you have ME/CFS and/or fibromyalgia? Have you ever considered being tested for Lyme disease? In this blog post I discuss why Lyme disease has always been on the back of my mind and what I've decided to do about it.

UPDATE:

Since writing this post, I decided to have a consultation at Breakspear Medical. I had various tests done, the results of which confirmed that I do indeed have an active Lyme disease infection.

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.

10 Comments

  1. I’ve thought about it, but I get so many different answers if there is different treatment if I did have Lyme’s disease. Some doctors have told me yes, there are different treatments than for fibro, other docs have told me no. If the answer is no, it doesn’t seem to be a point to get tested.

    • Hey Ashley, yeah that’s kind of how I feel about it too. The herbs I take are know to help boost the immune system and also suppress pathogens. The fact that I am getting better tells me that I am doing the right thing, so it doesn’t really matter if I know exactly what I am dealing with. Should that change in future, it may be something I look into again.

  2. I have had 6 lymes tests and finally on the 7th test I tested positive. I believe this test showed positive because I was so sick.This was 13 years ago and since then my health with treatments over the years has been up and down . I am just coming back after two years of being bed bound. I started treatment with western medicine until they said there wasn’t anything more they could do for me. I have since been under the care of integrate medical Doctor who doesn’t except insurance ( I live in USA) so it has been out of pocket.Getting tested is a personal individual decision. If you are struggling with chronic symptoms that are not responding to present treatments and your getting sicker, having a lymes test may be an option.

    • Hey Donna, wow. I think your experience goes to show just how unreliable the testing can be. It’s a shame that it wasn’t discovered until you were very sick. I kind of wish doctors would rely less on lab results sometimes and go more on symptoms. If your labs are fine but you are clearly sick and showing symptoms, shouldn’t that be enough to try some form of treatment? Especially given you don’t need to use invasive treatements; one of the reasons I take herbs is because of the low possibility for harm. I am pleased to hear you now have a doctor who is able to help you and that your health improves. I agree, I think if my health was declining or I wasn’t seeing any improvements I wouldn’t hesitate in getting tested.

  3. I hope more people will understand how often lyme is misdiagnosed for other things. When I first got sick I got sick VERY fast and no one knew what was going on. My pain dr and my PT thought I had MS, I had other crazy stuff thrown at me like breast cancer, AIDs, etc. Had I not done a lot of research I would have NEVER gotten more testing for lyme and maybe would have never found out that’s part of what was wrong with me. I worry that people with fibro and M.E. can sometimes be given the wrong diagnosis because of the faulty testing issues with Lyme and it scares me that those people will never feel better because they aren’t treating the right problem. I do understand your hesitancy and I think you will know if and when you are ready to get tested. I will say that I am in remission now, it took 4 years but it did happen. You rarely hear about people getting into remission so I like to let people know it is possible (but yes its very very hard) and I have damage from the Lyme Disease that may never get better. I used to think when I was in remission everything would go back to how it was and I have learned that just isn’t always possible, I may not have Lyme anymore but I have mild brain damage in my frontal lobes, extensive nerve damage, gastroparesis etc. I would be glad to talk to you more if you have any questions etc but it sounds like you have done your homework.
    genevieve : http://www.shipwithnosails.com

    • Hey Genevieve,

      Thanks for your comment. I’ve been following your story and I think it’s scary to think that you were misdiagnosed with MS. How many others are out there who have been misdiagnosed? For me, I know there is more going on than just fibro. What I’ve been dealing with for the past two years goes beyond what I’d previously experience as fibromyalgia. Unfortunately, once you have that label, it sticks.

      Whether I have ME/CFS (I certainly fit the diagnostic criteria) or something else, I don’t know. I do suspect I’ve had/have infections– but all I’m basing that on is my own intuition and the fact I’m getting better on herbal therapies. Whether it is Lyme or something else, I’m not sure. All I know is I am grateful to have found Vital Plan because without them, I genuinely think I would still be in the same situation I was two years ago.

      Had my health not been improving, I’d look more at Lyme testing. But as my health is steadily improving I’m not sure if it would put me any further forward. Maybe you would be able to share more on that. However, i would be doing it alone as I don’t think the nhs is well-equipped to deal with chronic Lyme patients.

      It’s awesome to hear you are in remission. That’s what I’m striving for too— see this post 🙂

      Lyme is very serious and it’s downright scary how much it can damage your body. It’s great that there are people like yourself who are helping to spread awareness.

  4. I definitely think having an accurate diagnosis is important from a treatment & management point of view, but in your case your treatment wouldn’t change very much whether you test positive or not. As it is possible to develop chronic fatigue syndrome & fibromyalgia as a result of Lyme disease, it may even be that you’ve had it previously & recovered, but it’s taken a long time to recover from so you’ve been left with CFS & fibro. I haven’t looked into Lyme, as it wouldn’t explain my symptoms, but I did have a similar decision to make when I received my EDS diagnosis. I was told that I could have genetics testing, but was advised that they gene responsible for hypermobile type of EDS (which is what I have) has not been identified, so it’s possible for someone to have HEDS but get negative genetics results. False positives are also common in HEDS according to the consultant I saw. I was worried that a false result would mean that I would end up with doctors not believing I have EDS, despite the rheumatologist’s diagnosis & the overwhelming clinical evidence. It sounds like you’ve thought through your options carefully & have come to a sensible decision. You can always revisit testing in the future if things change. Xx

    Tania | When Tania Talks

    • Absolutely Tania. I think if I was under the guidance of a doctor and had confidence that the test results would result in more options being available to me, I wouldn’t hesitate. It’s more the fact that I’d still be going it alone (ordering and doing the tests privately myself) and therefore wouldn’t be likely to change what I was doing. I wouldn’t rule it out at all and I wouldn’t be surprised to learn I did have it. I having been thinking more and more about having a consultation at Breakspear Medical– given they treat CFS– and if they suggested testing, I would say yes in that circumstance.

      I can completely understand your decision about not getting tested. I wish test results weren’t the be-all and end-all. Symptoms are there for a reason and speak for a lot.

  5. William Hammond Reply

    I appreciate that for many sufferers this information will be too late, but nevertheless people need to know about the erythema Migrans rash and the guidelines issued to medical practitioners when they see it. Public Health England say quote, “Patients seen by a practitioner with an erythema migrans rash should be treated with antibiotics for Lyme disease. The rash may be treated without waiting for a blood test which may be negative at this stage” Doxycycline seems to be the antibiotic of choice for Lyme. Of course antibiotics are not risk free so this needs to be discussed with your doctor. As things stand in the UK only 97% of general practitioners have been recently trained for Lyme. Maybe this is why so many sufferers are being dismissed as being “fixated” on Lyme and sent down all sorts of convoluted paths which do not get to the root cause.

    • Very important point, thanks for sharing. There should be no hesitation in treating if someone does have an EM rash but sadly this isn’t always the case. I think it’s also worth adding that the EM rash may be completely absent and that Lyme disease should not be ruled out on the basis that someone hasn’t presented with the rash. I do think there needs to be better education on recognising and treating Lyme disease in the UK.

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