Life with: Lyme

 

When life gives you limes...

    If you've stumbled across this post, then you likely have Chronic Lyme Disease, think you might, or know someone who does.  For an excellent, in-depth explanation of Lyme Disease, I will refer you to LymeDisease.org, but here's the basics.  You get Lyme Disease from a biting insect, usually a tick.  You may not even know you've been bit by a tick like a significant percentage of those diagnosed, including myself.  You don't have to live in or visit the Northeastern part of the US. Lyme disease has been found in every state, and most countries worldwide.  I don't know when I got it. I grew up playing in the woods right alongside lots of deer.  We had cats, dogs, goats, rabbits, chickens, and a horse. There were plenty of opportunities for me to contract it, but the local doctors believe that Lyme Disease doesn't exist in the Pacific Northwest, so it was easier for them to believe I contracted it on a trip to West Africa in 2005.  Either way, I've got it.  

    The Lyme bacteria, Borrelia Burgdorferi, enters your bloodstream and you have Early Lyme.  Symptoms are very similar to the flu and it's important to receive treatment right away.  Once the bacteria enters your tissues within weeks or months it is pretty much impossible to eradicate it.  At that point you develop Chronic Lyme Disease (aka Late Stage Lyme or Post Treatment Lyme Disease).  Treatment is approached in two ways, either by aggressive long-term antibiotics or naturopathically.  Because I've had some pretty bad experiences with antibiotics and the idea of using them for years, often through an IV, scared me more than the Lyme, I chose to follow the naturopathic route.  I've been actively treating my symptoms and their roots for five years now and I wouldn't begin to say I've gotten it under control, but there's a lot behind that.  

    For one thing, Lyme rarely travels alone.  It likes to bring a lot of friends with it and several of them have made their home in me as well.  I have tested positive for and dealt with the symptoms of Epstein Barr Virus (EBV), Mycoplasma, Babesia, and Bartonella. I also have many of the symptoms of Mast Cell Activation Syndrome (MCAS), which is now being identified widely alongside both Lyme and EDS, but we haven't had the bandwidth to go down the diagnostic path for this yet.  

    So what is life like for someone with Chronic Lyme? It's different for everyone, and often different every day.  Because Borrelia Burgdorferi spreads throughout your body, symptoms vary greatly.  On a regular basis I deal with brain fog, fatigue, depression, anxiety, migraines, headaches, jaw pain, muscle aches, joint pain, and digestive issues.  Sometimes all of these in one day.  I have good days and bad days, but I don't have symptom-free days. Because I also have Ehlers-Danlos Syndromes and a host of comorbidities it's difficult to say what part of my day is attributed to Lyme, what is EDS, and what is something else entirely.  In the interest of keeping things simple, I'm going to write one post at the end of this series that addresses my specific Chronic Constellation and how it affects my life.  

    Lyme is the great imitator and is often misdiagnosed as other diseases or conditions because of the overlap in symptoms.  It's also frequently dismissed by healthcare professionals because the symptoms can be transitory and inconsistent with your shoulder hurting one day and your knee the next. What is consistent, though, is the severity.  According to LymeDisease.org, "An LDo published survey of over 3,000 patients with chronic Lyme disease found that patients suffer a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis." Yes, living with Chronic Lyme can be worse than living with congestive heart failure. Common symptoms include: fatigue, sleep impairment, joint pain, muscle aches, other pain, depression, cognitive impairment, neuropathy, headaches, and heart issues. When I saw the graphic below from the peer-reviewed study found here, I was shocked to see that patients with Chronic Lyme Disease were surveyed as having more poor physical and mental health days than people dealing with cancer!

Number of poor physical and mental days per month of patients with CLD compared to the general population and other chronic diseases.

    Education on Chronic Lyme Disease is severely lacking in the medical community. For reasons detailed below some doctors don't even believe it exists, or at least not in their area, so it's difficult to find someone who is familiar enough with it to recognize the signs and seek testing.  Then you run into the testing debacle.  The CDC's recommendations for testing involve starting with the ELISA and then, if you test positive, continuing to the Western Blot.  The trouble with this is that these tests give false negatives about half the time.  That's even worse than at-home COVID tests! 

    As if it weren't difficult enough living with this disease, you also face the politics.  Before I learned about Lyme Disease I could never have imagined that a bacteria could have so much controversy behind it!  For reasons I cannot speak to with expertise, the CDC has continued to deny the existence of Lyme that lasts beyond the first two months of onset.  The evidence is overwhelming, there is no doubt among the population that experiences it or the doctors that treat them, but because of the CDC's stance on it insurance companies are far less likely to pay for treatment, there is very little research going into prevention and treatment, and doctors that treat chronic Lyme are actually persecuted and prosecuted. So people that have often gone years or even decades seeking diagnosis are now told that their disease isn't real. After extended medical trauma this last blow can be devastating.

    But what does living with Chronic Lyme Disease look like for me?  That's even more complicated. Because I also have Ehlers-Danlos Syndromes and a host of comorbidities it's difficult to say what part of my day is attributed to Lyme, what is EDS, and what is something else entirely.  In the interest of keeping things simple, I'm going to write one post at the end of this series that addresses my specific Chronic Constellation and how it affects my life.

    Here's the thing: Lyme Disease affects lives in a huge variety of ways, but no two people's experiences will be the same. It impairs your mental functioning, your emotional health, and potentially every part of your body. 

    If you'd like more in-depth information about Lyme Disease, it can be found at LymeDisease.org