Dysautonomia Awareness Month October 2015 – The link between POTS and Lyme Disease

DySOSAR

Dysautonomia Awareness Month has come round so quickly – It doesn’t seem like that long ago that I was writing my first posts to help the cause this time last year. I wrote two posts – 1. A Detailed Description of Dysautonomia & A Day in the Life of a Sufferer which you can read here, and 2. a post about POTS (a form of Dysautonomia) which you can read here. When I wrote those posts I had recently had a POTS diagnosis but I wasn’t aware of the cause of my condition and was told to accept that I’d probably never know. I spent months trying different medications ridden with side-effects to try and reduce my symptoms but to no avail. The only symptom that was reduced was the tachycardia. As I was coming to the end of the ‘miracle’ medication list that seemed to work for so many other POTS sufferers, I was learning to accept that I would probably just have to try and live with it. This was extremely upsetting as my quality of life was very poor and the thought of not regaining some of that was devastating. I did not understand why I didn’t respond to the treatments and felt like I had reached a dead end. That was until I decided to get tested for Lyme Disease and my tests came back positive. The cause of my POTS is Chronic Lyme Disease. You can read more about my journey to a diagnosis and testing in a previous post hereSymptom-Chart-Blue-Grey-Brown-2-19-15Just to recap; Dysautonomia is an umbrella term used to describe several conditions that cause a malfnction of the Autonomic Nervous System (ANS). The ANS controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which causes our involuntary processes to go haywire. Heart rate, blood pressure, breathing, are all affected. POTS, a form of dysautonomia, is an exaggerated increase in heart rate when standing.

POTS is a syndrome, meaning it is a set of symptoms caused by something else. The causes of POTS are many but commonly it’s brought on by an infection/disease such as Mononucleosis, Epstein Barr Virus, extra-pulmonary Mycoplasma pneumonia, Hepatitis C;1,2,3,4,10,11 and Chronic Late Stage Lyme Disease.

So why does Lyme cause POTS? 

If Lyme disease, a multi system disorder, isn’t caught early, the infection spreads around the body and begins to affect the Central Nervous System (brain & spinal cord), the Peripheral Nervous System (nerves that carry signals outside of the brain and spine), the Autonomic Nervous System (connects the brain with internal organs, such as the heart), the Cardiovascular System, the liver, the eyes and the muscles and joints. When Lyme affects the Autonomic Nervous System (ANS) POTS can occur as Lyme toxins disrupt the network of nerves which help the organs of our body to communicate with the brain. For example, when the brain sends a message to the heart, that message has to travel along the disrupted nerves resulting in incorrect messages which affect the heart’s rhythm and rate. And I can assure you that doesn’t feel very nice!!

There has been some recent research done on the link between Lyme and POTS – one study in particular that did a short series of tests on two women, found that both women had persistent symptoms of orthostatic intolerance consistent with POTS even after being treated for Lyme disease. The study suggested that altered immune activity or denervation of the autonomic system during and following illness may be an important trigger for POTS. You can find the study here.

More and more people with POTS are finding they have Lyme, and vice versa. Because reliable Lyme testing is very hit and miss, especially in the UK, it is highly plausible that many POTS sufferers who have been tested for Lyme may have received a false-negative. At which point they probably received their diagnosis of Dysautonomia and accepted it like I did before I decided to get tested for Lyme in Germany. There is no real treatment for POTS alone, some people grow out of it, but those who don’t learn to manage it. Those who manage to find out the cause of their condition are more likely to recover over time. One study found that around 50% of post-viral POTS patients had substantially recovered within 5 years of the onset of their symptoms – and of the 50% that hadn’t recovered, many had seen some improvement in their daily symptoms. So if you or someone you know is suffering from Dysautonomia with unknown causes, it might be worth them reading up about Lyme disease. If their Dysautonomia turns out to be Lyme-induced, the prospects for improving their condition are greatly improved.

I have not yet started Lyme treatment but I will keep you updated on how the treatment goes and how it affects my Dysautonomia!

 

9 Comments

  1. Donna // February Stars October 8, 2015 / 12:05 pm

    It’s scary how much dysfunction Lyme can cause in the body. Thank you for such an informative post– people need to be aware of this. Good luck with your Lyme treatment, I hope you begin to see improvement soon

    • Sophia October 14, 2015 / 11:17 am

      It really is Donna – very scary!! It seems to affect all of our bodies systems. No problem at all, glad you found it useful!

      Thank you, I am just desperate to get started with treatment now but everything takes so long.

      I hope you’re doing ok?

      xxx

  2. Fliss October 9, 2015 / 11:06 am

    Hi Sophia,

    Just wanted to say a big THANK YOU for your heartwarming, inspiring, well written (you can see the linguist / speechie in you! So all your speech pathology training still helps you out in blogging, see?! *I’m all about the silving linings*), and poignant blog on a daily life in an individual with chronic illness. I too have a chronic illness but it’s undiagnosed so I’ve got a long way in the medical system to go yet. Anyway, I just started to get into reading positive chronic illness blogging the other way as a coping strategy for my chronic illness and yours was the first blog I found – which led me in turn to Freckles & All, Natasha Lipman, & Not that kind of Dr. Are there any other chronic illness blogs you’d recommend? If you have the time and energy sometime, I’d love to see a post on your “chronic illness go-to resources” that included a list of online bloggers / social media that you tap into for this :)

    Thanks again! You’re amazing. Keep being you!

    Hugs from Australia x

    • Fliss October 9, 2015 / 11:07 am

      *just started to get into reading positive chronic illness blogging the other WEEK

    • Sophia October 14, 2015 / 11:15 am

      Hello Fliss,

      No problem, I am so pleased to hear you enjoyed reading my blog! That means such a lot!
      I’m really sorry to hear you’re also a chronic illness sufferer, I really hope you can get some answers soon! Keep going with it as you will get there lovely.
      Yes I can recommend some other blogs for you: http://februarystars.co.uk, http://www.hayleyeszti.com, http://lifeintheslowlanewithme.blogspot.co.uk, http://emmadrusilla.blogspot.co.uk. Toni Bernard writes pieces in psychology today which are very useful for chronic illness sufferers too.

      Hugs right back! xxx

      • Fliss October 16, 2015 / 4:38 pm

        Hey Sophia,

        Thanks for your helpful reply! Have you tried any sleeping aids to reduce your painsomnia? (i.e., not medications, but practical aids). Like this… http://www.chilitechnology.com.au/ Obviously this is crazy expensive, but I just started searching for sleep aid ideas since I’m up tonight unable to sleep due to my condition (my condition fortunately does not cause pain but still can result in me being unable to sleep for a while due to overheating but unlike you I have the luxury of being able to take ice cold showers to help me out, vs. pain which is really tricky). Also there are claims that water beds are meant to help in sleeping (not sure if that’s true, just wondered if you’d given anything like that a go). Of course, I’m not saying, wow, you can’t sleep because you “just haven’t tried enough” – it sounds so awful to have painsomnia and you have my heartfelt sympathy – you’re being really resilient about it but it must be so horrible. I was just thinking about exploring a few of these sleeping aids myself and wondered if you’d given any a go personally! x

  3. Polina October 11, 2015 / 3:24 pm

    Thank you, wonderful girl, for such informative post, it must be so hard to write while suffering. Hugs to you!
    Hope treatment will help you, good luck with it!

    • Sophia October 14, 2015 / 11:03 am

      No problem at all Polina! I’m so glad you found it useful. Hugs right back to you! xxx

  4. mp3juice June 4, 2016 / 5:40 pm

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