P-p-p-pulse it

I’ve been back on antibiotics for about two months now. I started out with daily rifampin and azithromycin. A month ago, due to an interaction issue, we switched out the zith for minocycline. My doctor conferred with the lead doctor at the practice about my case and decided that if I felt ready to, I should switch to pulsing both the rifampin and minocycline. They recommended taking both antibiotics for two weeks, then take a break for a week, then repeat. I have mentioned here before that research has shown pulsing antibiotics to be very helpful in treating Lyme. Part of the reason Lyme Disease is so difficult to eradicate is its ability to linger in dormant persister cells. By pulsing antibiotics, you sort of trick the persister cells into thinking the antibiotics are gone, so they “wake up” or  reactivate, and just as they do, BAM – more antibiotics! It makes good sense, has done well in lab tests, and anecdotally, has helped many patients.

In theory, my doctor also sees it as a way to continue my treatment while giving me some “breaks.” In practice, it sounds to me like a herxheimer rollercoaster on a loop, as each time I resume antibiotics, I can expect a flare in symptoms to follow.

In addition to the antibiotic pulsing schedule, I am doing biweekly IV therapy, with just a couple of key ingredients to keep cost down. One of those is glutathione, which is sometimes used in treating diabetes and Parkinson’s, and also to help lessen the negative side effects of chemotherapy. Less items in the IV means not only less cost, but less time in the chair. My old IVs took a good two hours or so to drip, this one takes about 45mins to an hour.

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IV, blood work, cat nap – the recliners are pretty sweet

Regular blood tests to monitor my progress and keep an eye on things like kidney, liver, and adrenal function (all of which could be impacted by Lyme and/or antibiotic use), continue to be important.

Also continuing are the necessary supplements and vitamins to help strengthen my immune system and lessen some of my bothersome symptoms. I am also taking an enzyme that functions as a biofilm buster – biofilm being the protective coating that can keep antibiotics from getting to Lyme bacteria. This enzyme needs to be taken away from food. Probiotics need to be taken away from antibiotics. Another immune boosting supplement needs to be taken first thing in the morning. All this is to say that I am now (again) on a schedule of taking pills of one sort or another at 6 different times of day. Over the last several months, I was able to pare down to 4 times per day which was much simpler, but this current protocol just has too many can’t-take-that-with-this restrictions, so I dusted off my FOURTH pill sorter and am back to six times per day.

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Here’s a photo from March 2015 when I first went to a 6 times daily schedule. I had since retired one of the blue/yellow containers, but it’s now back in action!

This past week was my first “off” in the pulsing schedule. It was nice to have a few less pills to take, and was a bit easier on my stomach. I also felt somewhat better overall than I have the past few months. I had one very good day, and the rest were in the realm of okay, with many symptoms not bothering me too much until the evenings, which always tend to tough.

So with one “off” week under my belt, it’s time to go back on the antibiotics. I’m mentally bracing myself for a rough week of herxheimer reactions, but hoping for the best!

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Down the hatch!

It’s not me. It’s the Lyme.

One might think that after a year and a half of being debilitated by Lyme Disease, I’d be a pro. Sure, I can sort pills for the week in record time, and swallow an obscene amount of them at once without batting an eyelash, but the truth is that this disease continues to test me in ways I never could have imagined.

Looking back over the notes I keep of my symptoms, I have had only a handful of good days since January. My good days all but disappeared for a while – replaced by good half or partial days, which always ended in awful, symptom-heavy evenings. My days have been filled with a rotating combination of exhaustion, brain fog, joint pain, neuropathy, flu-like body aches – the works.

Never getting a full good day began to take a toll. It can be very isolating to be ill for a long period. It’s hard to get out and do things. It’s hard to even make plans because you don’t know if you’ll be well enough to keep them when the day comes. It’s hard to chat with friends when you know your answers to “What’s new with you?” are not particularly happy or interesting.  It’s hard to be stuck at home, seeing your space become increasingly unkempt as you struggle to complete even the most basic household maintenance. It’s hard to hope for better days when they just don’t seem to come.

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Bad day. Stuck on the couch, in pain and frustrated.

This is when it is all too easy to get depressed. The longer you go without feeling well, the harder it is to remember how it feels to be well. Throw in some guilt and the societal rhetoric of “mind over matter” and “stay positive,” and you can end up wondering… Am I really feeling exhausted and run down from pain and illness, or am I being weighed down by sadness and negative thoughts? Am I not trying hard enough? Am I being lazy?

Over the last couple of weeks, I was starting to sink into that hole. I wondered if I needed to push myself. Perhaps if I could try to be a little more active, I might feel better just by virtue of getting up and moving. Mind over matter.

Spoiler alert – no amount of positive attitude can negate illness. Can it help? Absolutely! But I have a serious illness, and no matter how positive my outlook is, I have limitations. I can certainly put on a funny podcast and start doing some dishes, but I will only last until my joint pain or neuropathy becomes unbearable. Some days, that’s long enough to clean all the dishes, some days, I can only get through a few. That pain will come when it’s going to come, regardless of how positive my thoughts are.

I was reminded of this reality when, two days ago, I woke up and felt…kind of great! I did not get extra sleep, or eat healthier the day prior, or think extra positive thoughts – I just got lucky with a good day. I was so happy to feel well and spent my day buzzing around the house attending to all sorts of neglected projects, laughing with podcasts and singing along to favorite tunes. That evening I still felt pretty well, and was able to play soccer and have a Nerf shooter battle with my son!

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Everything seems a little brighter on good days

I was happy not just to be active and productive, but even moreso to be reminded that I am not lazy, or being kept down by my own sadness and negativity. When I actually feel well, I revel in it!

So here it is, for me, and for anyone else struggling with a long term illness, in black and white, as a reminder: Our illness gives us limitations, and we have no choice but to respect them. That does not make us weak. I am not weak. I am not lazy. I am sick, and I am doing the best I can.