Lyme Disease

Reclaiming My Health

You will not read much about this on my Izzyandthefluff Instagram, because that account is purely for spreading love and joy. But I cannot ignore this part of my life (trust me, I try) because it affects every aspect of it.  Since I was 16 years old, I have been chronically ill. This explains why you can see from my instastories that I am pretty much always home. If you’re interested in my story, which is scattered on my personal Instagram page: keep on reading.

It started with one acute infection after the other. While the infections were treated, my health kept deteriorating. Doctor after doctor could not figure out what was wrong with me.  Eventually I was diagnosed with Chronic Fatigue Syndrome/ME. There is no cure, except cognitive behavioral therapy. I tried and finished this, to no avail.

Over the years, my health got worse. I could not function normally in daily life and the state declared me disabled and unfit for labour. I finished highschool and got my university BA in History on pure willpower and with a lot of delay. After about nine years of rapidly getting sicker, all the willpower in the world could not sustain me any longer. I got so ill that I had to drop out of society completely. My fear of ending up in a wheelchair became reality and at my worst I had to be carried from my bed to the bathroom.

Symptoms

I can provide a list of my dozens of symptoms, but this all just sounds rather abstract. To healthy people I like to explain it as having all at once: a permanent severe hangover, a really bad flu and a large rock placed on top of my chest, while my legs are on fire and my nerves are being electrocuted. Cognitively I feel like I have Alzheimer’s and brain damage.

Diagnosis

At my wit’s end, I went abroad to see a world renowned CFS/ME specialist. He quickly discovered that I do not have CFS/ME at all. I tested postive for Lyme Disease and several co-infections such as Bartonella. After nine years of being ill, I finally knew what I was up against.

How could all the other doctors have missed this, you might wonder? Because the standard antibody tests for Lyme Disease are only 34 – 59% sensitive. My doctor performed a different (PCR) test for Lyme, where the bastard did show up. I do have antibodies for the co-infections, but those were simply never tested before.

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I won’t go into much detail, but Lyme Disease is very often misdiagnosed and mistreated. The treatment guidelines are outdated and hotly debated, meaning that treatment for Late Stage Lyme is not (fully) covered by insurance. If you want to know more about this, you can watch the documentary Under Our Skin. In this area, battles are currently being won in favour of Lyme patients all over the world.

Treatment

While I always call Izzy and Zoë my furry medicine, unfortunately I also need a lot of non-furry medicine. I have a PICC-line because I need IV therapy every day, besides dozens of other medications and injections. Due to my severe food allergies and leaky gut, I am on a strict diet.

The treatment I am on is  working and I am making progress. I have not been in a wheelchair in years and I am no longer housebound. I still suffer from every symptom, though, and still cannot function normally in daily life. I am also completely dependant on al the medications, especially the IVs. I still spend the great majority of my days at home (hence the abundance of instastories on Izzyandthefluff), and have to physcially pay for every activity I do. The RMA in History that I started in 2012, remains unfinished.

Looks can be deceiving

You might not be able to tell from the way that I look that I am ill. Lyme Disease is what they call an invisible illness. Generally, people tend to only see chronically ill patients on their good days and therefore it’s sometimes hard to understand that they are sick. You won’t see how they have to balance their limited energy and on bad days you won’t see them at all. Sometimes it’s really not invisible at all, if people would just look carefully. The best way to explain what it’s like living with a chronic illness, is the spoon theory.

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Cats rule

Izzyandthefluff is my escape from this not so fun reality. Through running this account, I have discovered my love for photography. And because I am home alone with these two cuties all day I can take tons of pictures of them. Running this account gives me a lot of positive energy. It also makes me feel like I can still achieve something from my home, despite my illness. Every nice comment, DM or feature that I get, makes me incredibly happy.

If you have made it this far in, thank you for reading my story. I’m sharing it to raise awareness for Lyme Disease. If you have undiagnosed symptoms and doctors can’t find what’s wrong with you, or if you are diagnosed with the most common misdiagnoses of Lyme Disease like CFS/ME, Fibromyalgia, MS, Parkinsons and ALS – please make sure you get properly tested for Lyme Disease. Please know that the standard tests are not reliable and that having the correct diagnosis and treatment might just give you your life back, or literally save it.

If you think you might have Lyme and want more information on how to proceed, feel free to DM me on either Izzyandthefluff, my personal account or just email me at meow@izzyandthefluff.com. I am more than happy to help.

If you would like to help me out financially by contributing to my medical bills, you can take a look around in my webshop where you can purchase izzyandthefluff postcards. All proceeds will go 100% towards my treatment. You can also donate directly by clicking here.

Imagine coming down with a flu that never ends. Imagine doctors being unable to find the cause and dismissing your symptoms as ‘in your head’. Imagine fighting every single day against the the crushing fatigue and devastating pain, while attempting to still make something of your life. Imagine missing out on education, jobs, parties, vacations, life. Imagine feeling like you’re slowly dying and doctor after doctor doing nothing more than suggest you see a psychologist. Imagine losing the ability to walk and being so desperate for help you’ll even travel abroad for medical attention.Then imagine finding out after nearly a decade of being ill, that you have Lyme Disease and several co-infections. Imagine the Lyme having paralyzed your breathing muscles for 70% and having caused a lot of damage that previous doctors just never tested for. Also imagine you have hope of recovering and reclaiming your life. Then imagine your insurance refusing to cover your treatment and having to pay everything out of pocket. Imagine people suffering and even dying because they cannot afford it. Imagine this could all have been prevented if the doctors had just used a more reliable bloodtest from the start. Unfortunately this story is real and it hasn’t happened to just me but millions of people across the globe❗ Today I #takeabiteoutoflyme to help spread awareness for this awful disease so one day, Lyme patients won’t have to fight both their disease and the doctors who are supposed to help them. Facts: ⭐The standard testing catches only 34 – 59% of Lyme Disease cases. ⭐There has never been a study proving that a month of antibiotics will cure Lyme, whereas there have been at least 273 studies proving the opposite. Yet the current most-used treatment guidelines maintain that a month of antibiotics will cure Lyme Disease. ⭐Most cases of persistent Lyme Disease require an extended course of antibiotic therapy to achieve symptomatic relief.

Een bericht gedeeld door 🇳🇱Joanne (@joannesmienk) op