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Living with Lyme Disease: The Quest for Answers (Part 1)

Oct 3, 2024

3 min read

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What is it like if you have Lyme disease? Living with Lyme disease and its chronic symptoms poses everyday challenges for many people.  It’s hard to diagnose, it’s not a “one size fits all” diagnosis and often one day can be different to the next for Lyme sufferers. 

Some days are hard.  Some days are harder.

That’s the part people often struggle with the most: the inconsistencies. That’s what makes this disease hard to detect and what makes it hard to get support, both professionally and personally.

Doctors often take one look at your chart and they see a whole slew of medications listed. They see that you’re currently in weekly therapy sessions and that you’re seeing a psychiatrist once a month.  Maybe you’ve checked yourself into a psych ward or you’ve tried outpatient programs. They see that you’ve made several recent trips to Urgent Care or the Emergency Room. Perhaps you’re being treated for fibromyalgia, bipolar disorder, IBS, dizzy spells, or “suspected” MS. Your chart shows that you have a history of addictions or eating disorders -- that you’ve already worked so hard at trying to overcome – but it’s still in there.


They read all of this information – this very general, surface-level synopsis of who you are on paper – and what do they conclude?… That it’s all in your head.

A Slap in the Face

Your credibility goes out the window. You ask them to test you for Lyme disease and they either flat-out refuse, or they reluctantly order the test but might “warn” you that Lyme isn’t even real. The results come back and your doctor interprets the bands for you. You’re never even given the full report – just a blanketed “negative” reading.

You’re told again, maybe gently, that you need to seek mental health assistance. And you’re too exhausted, both physically and mentally, to stick up for yourself. So you nod your head, fight back the tears and decide to take your business elsewhere. You feel like giving up, but you keep pushing through because that’s all you can do.

Then you go home and hop on the internet. You start searching for alternative treatments. You do a deep delve into supplement ingredients. You join Lyme support groups to find out if there are any success stories out there. You crave some sort of connection with someone who can relate to you.

Maybe you try a herbal protocol or hyperbaric oxygen therapy. You try mindfulness techniques and meditation (because “maybe it really is all in my head?” …after all, your Lyme test did come back “negative” didn’t it?). So you clean up your diet. You cut out gluten and dairy …and nightshades …and alcohol …and refined sugars …and, and, and…

Still nothing is working. You’re desperate and you want to give up at the same time. You’ve already spent hundreds, if not thousands, on alternative remedies and you’re running out of funds and, even worse, hope. These are by far the darkest days of your life. You feel so alone and you’re questioning everything.


We know because we’ve been there.  We’ve been there ourselves and we’ve been there with hundreds of people who feel this way.  We know.  And there is hope.

Note – this Blog was written by one of our team who suffered with chronic Lyme and the related symptoms.  It’s not meant to scare or alarm.  But it is a real account of what a Lyme sufferer went through and what we know others are going through.  We share because we want you to know that you’re not alone and there are people who understand and who you can talk to.

Oct 3, 2024

3 min read

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1

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