Hykes With Lyme

Every Sunday I take the time to sort and organize the pills, medication and supplements I need to take for the week.

Prior to dedicating a day and time to prepping all my supplements and antibiotics, I sat a basket on my kitchen table and would dish out my morning, mid day, evening and bed time pills as needed. This is a super stressful way to go about taking your meds, so don’t do that. ◡̈

As my herbals and supplements list kept getting longer and longer, I knew I needed to find a better way to organize myself in order to take certain pills at different times.

My first piece of advice for you is to get a pill organizer. This is one of the things that made me feel like an old woman, but as time went by, I realized I needed it and it was beneficial to my health and my sanity.

I actually have three different pill organizers and a detailed excel spreadsheet that correlates.

1. My first organizer has four different slots per day of the week. This is where I keep all my dry herbals and antibiotics.

2. My second organizer is kept in the refrigerator to store vitamins such as fish oil, vitamin E and my probiotics – things that need to be kept cold.

3. My third organizer is a travel sized one. This is awesome to put my pills into if I am leaving the house for an extended period of time and know that I will need to take medicine wherever I am.

Some things that do not go into my organizers are my b12 shot, which I take twice a week, my glutathione, which I inhale twice a week and my naltrexone chelation cream, which I put on my collarbone before bed every night. Those are things I relied on my spreadsheet and creating alarms on my phone to do certain days of the week. Once you start a routine, it gets easier to remember and track. But when I was still in the trial and error phases of my diagnosis, this was a very overwhelming concept.

Pill prep will only take 20-30 minutes of your day depending on your protocol, but it makes the rest of the week so much easier. If everything is divided up and ready to go for you, all you have to do is open up your container and take your pills at the designated time. So easy!

I fill in two different pill organizers, and I have all my pill bottles marked with the quantity I need to take and the time of day which I need to take them. So the 2AM and 2PM you will see on my pill bottles does not literally mean I wake up at 2:00 in the morning – it means I take two of this pill with breakfast and two with dinner. Make sense?

Some pills I only need to take one a day, three times a week or only at night. It depends on the supplement or vitamin and what the doctor ordered. Some things I have to take with food, other things I cannot take with anything heated and there are many other instructions, but those are just a few examples.

This was very stressful a first – trying to coordinate taking new things, adding them into my routine AND noticing how taking new supplements made me feel.

You will be able to see a difference and notice what helps and what really doesn’t do anything. That’s the weird thing about Lyme – certain things react well with certain body chemistries- no one is the same!

Once you notice how you feel, WRITE IT DOWN. I don’t care if you’re an old-fashioned paper and pen type of person, or if you enter it in your phone calendar. Put it somewhere that you check regularly and can acknowledge so you can track your progression or recession.

When I organize every week, I also keep a stack of sticky notes nearby. This way, as I run out of supplements, I can write down what I need to order.

Some of my medicine is compounded and I have to order it then have it shipped to my house. If I didn’t have a day where I organized everything, I wouldn’t know when I was running out of certain medications.

Organization is so important when it comes to your health and what your body needs to function at its best.

If you have any questions or comments on how to organize your supplements or start a routine, let me know and I would be happy to help. ◡̈

Once you’ve read My Lyme Story, you’ll probably be able to tell that I left out some of the finer details, which built up my frustration prior to being diagnosed.

I gave a lot of insight about the onset of my symptoms while I was in Nashville, but once I got home, lost my job and had to drop out of a wedding. These were only two of the small upsets I experienced in addition to the excruciating pain of my arthritis-like symptoms.

I want to reiterate the note I left in My Lyme Story – WRITE EVERYTHING DOWN. Track everything you experience, how you feel, the doctors you’ve seen and the medication they put you on.

As I write this post, I am literally referencing the calendar I created for myself. So without further adieu, here is what I went through:

April 2018 – The bottom, left side of my jaw started hurting. Hurting so bad that I couldn’t really chew hard foods or open my mouth to yawn without being in pain. I didn’t really think anything of this at this time, but I thought I was just grinding my teeth at night. (Turns out, jaw pain is a big indicator of Lyme.)

May 18, 2018 – My left knee swelled up

May 19, 2018 – ER Visit #1 – Vanderbilt; Xrays, bloodwork, knee drain, Naproxen prescribed.

May 23, 2018 – Orthopedic Visit #1; Xrays and ointment prescribed.

May 24, 2018 – Right knee felt like it needed to pop.

May 25, 2018 – Right knee swelled (both knees are swollen at this point and I am having trouble moving).

May 27, 2018 – ER Visit #2; bloodwork, prednisone prescribed

May 28, 2018 – began taking prednisone (note: Lyme feeds off of steroids and does not help reduce symptoms).

May 29, 2018 – Orthopedic Visit #2; bloodwork, tested for Lyme and Rheumatoid Arthritis, still taking prednisone.

June 1, 2018 – Orthopedic Visit #3; negative Lyme test, bloodwork shows as clear, still taking prednisone.

I was only prescribed a short dose of prednisone, and after I stopped taking it…

June 3, 2018 – both knees swelled up bigger.

June 6, 2018 – Family Doctor Visit #1 in wheelchair, blood work ordered, prescribed a stronger and longer dose of prednisone. (As you can see, doctors were wanting prednisone to reduce my swelling and it was not working and continuing to harm my body.)

June 8, 2018 – Chiropractor Visit #1; ultrasound to relax muscles around knees. This was a temporary fix that allowed me to walk out of the office and into my mom’s car in the parking lot. Please keep in mind, I have no driven since May 23, 2018.

June 11, 2018 – Chiropractor Visit #2; ultrasound on knees, again.

June 14, 2018 – Chiropractor Visit #3; ultrasound on the back of both knees.

June 15, 2018 – Rheumatologist Appointment; more blood work ordered and a stronger dose of prednisone prescribed.

June 19, 2018 – Family Doctor Visit #2; still in a wheelchair – my doctor is happy we have an appointment set up at the Cleveland Clinic the next day.

June 20, 2018 – Cleveland Clinic Visit #1; cortisone shot in left knee because it is more swollen than the right knee. I continued with the prednisone throughout the month of June and did not feel any better even having the cortisone shot. Nothing was changing and I was miserable.

July 3, 2018 – Family Doctor Visit #3; He does not know what to do.

July 8, 2019 – Stopped taking prednisone, and my knees got even worse.

July 10, 2018 – Cleveland Clinic Visit #2; double dose of cortisone shots (one in each knee), the head of Rheumatology ordered an MRI of my knees and ultrasounds of my legs, blood work ordered. I am now taking prednisone for swelling and Meloxicam for pain.

July 20, 2018 – Cleveland Clinic Visit #3; MRI of both knees.

July 30, 2018 – Cleveland Clinic Visit #4; Ultrasound appointment – found one blood clot in each leg below each knee, triaged to Vascular Surgeon, prescribed blood thinners and had to stop taking birth control pills.

At this point, my body is completely out of wack and I’ve been to more doctors than I ever have been in my life. (Probably not true, but you get the point.)

August 7, 2018 – Cleveland Clinic Visit #5; I had a really bad headache this day. I saw the head of Rheumatology again, he expressed he did not know what was wrong with me after all the blood work, MRIs or Ultrasounds. He asked a bone specialist to help into my appointment and he also admitted nothing muscular or skeletal was wrong with my body. My mom requested they draw blood and test for Lyme again, which eventually came back as my second negative test. This day, my mom drove over to my Lyme literate doctor’s office and paid a deposit for our first visit.

August 9, 2018 – Cleveland Clinic Visit #6; more ultrasounds, my back started hurting every time I took a deep breath, and I still had the same headache from two days ago.

August 10, 2018 – achey all over; I did not leave my bed.

August 13, 2018 – Lyme Literate Doctor (LLMD) Visit #1 – This is the turning point of my story, but also a day I cried A LOT.

August 15, 2018 – After digesting my new medication regimen, I started adding new pills and supplements into every day. This is different for everyone based on their symptoms and body chemistry, so I will not detail every little thing I added in and had to take.

August 20, 2018 – Akron General Blood Draw #1; This is where I took the boxed blood work kits to ship out to California and Chicago for my IgenX and heavy metals testing.

September 2018 – this was a month of adjusting, adding things in, learning how to contact the compounding pharmacy and still trying to get around my house by butt-scooting down the steps or having my dad or brother carry me up the steps to bed at night.

October 2, 2018 – Diagnosis Day; this was Visit #2 to my LLMD, and he thoroughly explained everything my testing showed. While I had now upgraded from wheelchair to one crutch, I still was feeling awful. Better, but not myself. It was evident that the things my LLMD had suggested to do were working, but now it was time to tackle exactly what was wrong.

I was diagnosed with Babesia, Bartonella and Ehrlichia, all co-infections of Lyme disease. I was mad. You would think that five months would be enough time for a person to accept their fate, but I did not want to believe it. I wanted to go to my appointment and hear my doctor tell me any diagnosis other than Lyme Disease. But at the end of the day, I realized I was thankful and that it could have been so much worse.

If it weren’t for the strength, positivity and visits from family and friends, I don’t know how I would have gotten through last summer. It was depressing, and Lyme does that. There were day where I just cried in bed and felt sorry for myself because of the pain; but you can’t do that.

You have to attack Lyme the way it attacks you; aggressive and positive that it is going to infect you and win. You have to take charge of your own body, your own mentality and THAT is how you defeat it.

No, there is no absolute medical cure to Lyme Disease (yet), but it all starts with your will and determination to want to get better. I did not want to give up eating a bagel for breakfast everyday or going to Handel’s to get ice cream with my boyfriend on date nights, but the reality is – I would give up anything to be able to function, be mobile, drive my car or obtain a job again. Food is fun and all, but walking is necessary for the type of life I want to live.

Lyme is a hard, hard, thing. Hard to diagnose and hard to live with, but it does get better.

If you or someone you love is going through a similar process, please, keep receipts, ask for your medical records, get copies of your ultrasounds and Xrays. This is YOUR medical information, for which you are entitled and medical facilities cannot tell you no. Another pro-tip I learned throughout all of this is to get all copies of your testing faxed to your Primary Care/Family Doctor. You see them more frequently, and they are much more accessible than some doctors at places like the Cleveland Clinic. Do not be afraid to stand up for yourself and obtain your own information!