Brew some coffee and settle in – this ended up being a super long post.
When I first started to explore the idea that my illness might by Lyme related the first thing I did was look up the treatment and prognosis for Lyme Disease. Much to my excitement the treatment seemed to be a brief course of antibiotics that would magically cure all symptoms and rid my body of those bastard spirochetes.
It wasn’t until I dug a little deeper that I learned just what a fight Lyme treatment actually is. I thought it might be interesting, now that I’m 6 months into treatment myself, to outline what a day in the life is like for someone being treated for chronic Lyme. But before we begin please take note of the following:
- My treatment plan was set by my LLMD and is specific to my symptoms, co-infections, and individual needs. I’m also not a Doctor so am just writing from the patient perspective, meaning there could be inadvertent errors in the below. Lyme treatment really does need to be tailored to each individual. This is just what my day looks like for interest sake.
7:00 am: This is when I first wake up which is undoubtedly a struggle (although, let’s be real.. this isn’t necessarily a Lyme specific problem.) The first thing I do after waking up is take a Proton Pump Inhibitor. This essentially protects my stomach from all the other medications that I’m going to take throughout the day and decreases the likelihood of any resulting GERD / Ulcers.
7:30 am: Now that the Proton Pump inhibitor has had time to work its magic, I take the bulk of my medications for the day. In no particular order these include:
- A beta blocker – to reduce my heart rate response which was elevated from both the untreated Lyme and resulting pericarditis / endocarditis.
- Hydroxychloroquine – this works as a double edge sword to kill any of the cysts the Spirochetes may have formed to prevent the efficacy of other antibiotics and reduce inflammation from arthralgia. It also seems to have helped reduce the inflammation around my heart sac (bonus!).
- 2 Antibiotics – I take 2 different strong strength antibiotics to kill the spirochetes. This one is pretty self explanatory.
- 1 anti-malarial medication – The bulk of my skin symptoms weren’t actually from Lyme disease itself; but instead the co-infection: babesiosis, which is often transmitted at the same time as Lyme. Babesiosis was described to me as essentially a modern day malaria so that’s how we treat it.
- 2 medications to treat neuropathy – These essentially work to calm down my nervous system which was injured from the untreated Lyme. These are the medications that won’t necessarily rid my body of the bacteria, but make life a lot more bearable in the interim by decreasing pain and fatigue. They also should help with brain fog although I’m not sure that they have.
- An antihistamine – This is to help regulate my body’s allergy response which went out of whack prior to treatment.
In total this works out to 8 pills I have to remember each morning.
9:00 – 11:00 am: I’ve been super lucky in that my body hasn’t really had any negative reactions to the medications except that from 9:00 am – 11:00 am every morning I am queasy from the anti-malarial. I can reduce this by eating a little bit more than usual throughout the morning but it’s still a tough time.
12:00 pm: This is when I take my vitamins to make sure I’m giving my body everything it needs during treatment. Right now this consists of a multi-vitamin, vitamins D, a B12 capsule, and some Zinc.
3:00 pm: At this time every day without fail I begin to crash. The bulk of my medications have a warning: may cause drowsiness, so you can imagine how I feel after 8 of them. If it’s the weekend I usually nap from 3:00 – 5:00pm, if it’s a weekday I just up my coffee intake.
5:00 pm: I take another proton pump inhibitor to get ready for my supper time antibiotics.
5:30 pm: With supper I take another dose of hydroxychloroquine and another dose of antibiotics but thankfully no anti-malarial (I really should be, but my body just can’t take it.) 3 capsules total.
7:30 pm: Without fail I have a bath containing two cups of epsom salts. I don’t really understand the science behind these but oh my goodness they help the pain so much.
8:00 pm: If I wasn’t able to nap this is when I normally start getting ready for sleep. I take another dose of the two drugs used to treat neuropathy as well as a probiotic (Theralac) and head straight to sleep for 10-11 hours. The drugs usually make it so I have no problem falling and staying asleep. Another 5 capsules.
That’s it for my day! It’s essentially a wash, rinse, repeat process from there. There are so many different ways to treat Lyme, but so far this is the one that’s working for me. I hope you enjoyed this little bit of insight into what a typical day looks like for a Lyme patient!