Three weeks of butt injections completed; three weeks cancelled. It was a mutual decision between my doctor, and my wife and I. The cons were outweighing the pros. It is great that I got six injections in, and we can feel confident that they did something based on the level of herxheimer reaction I endured. In theory, going to my doctor’s office twice per week, once for an injection, and once for an injection and IV infusion, sounded like a lot. In practice, it was borderline all-consuming.
It takes about 30 minutes to travel between the office and home. The injections require a long walk afterward to help the medicine move through the muscle, and and the IV infusion takes about 2 hours. Accounting for wait time, variations in travel, etc it was a solid 6 hours per week outside the house – the equivalent of one full day of school for my son. On injection days, I would need to spend a good bit of time sitting on a heating pad on the couch afterward. The medicine is thick, and can sort of bundle up in a painful knot after the injections; applying heat and kneading the area can help soothe this. On infusion days, I am usually groggy for the remainder of the day. So that’s one full day of doctor’s appointment and grogginess, one half day of doctor’s appointment and pain. Leaves three days free, right? Wrong. The effects of the injection would hit 1-2 days after each one, and last for 1-2 days…when it would be time to get another one. Rinse, repeat.
My joint pain and nerve pain were flaring, naps were becoming critical, my rear end was bruised and sore, and as I told my doctor, I wouldn’t go so far as to say I was feeling overwhelmed, but I was definitely fully whelmed. I was experiencing maybe one day Monday-Friday when I felt decent, and was actually home to try to squeeze in doing something other than being sick. Add in some lingering concerns about a possible allergy risk, and we decided to halt the Butt Injections of Doom.
So what am I doing instead?
I am returning to rifampin, an antibiotic that I was on previously. Rifampin caused strong herxing in the form of the worst joint pain I’ve had when I started it (and restarted it after a short break), but once the pain subsided, I felt the best I have felt throughout treatment when I was on it. We discontinued it before the bicillin injections so as not to overload. I’ll also be drawing in another drug, alinia, which I was meant to draw in during the injections, but I just felt my plate was too full to do it. It is an anti-parasitic drug that has been shown to be effective in attacking Lyme bacteria in his cystic form. It crosses the blood brain barrier, which is important for a patient like me with neurological symptoms. I am “pulsing” this drug, meaning taking it only a few days per week. Research has shown that pulsing antibiotics can be very effective for eradicating Lyme persister cells, which are cells in a dormant state that can hide from antibiotics. Just as switching antibiotics over the course of Lyme treatment can help attack stubborn Lyme cells by catching them off-guard, so to speak, taking days off with an antibiotic can do the same.
I will continue IV nutrient infusions weekly. These are supportive infusions, that do not contain antibiotics. They contain vitamins and supplements to help boost my immune system, energy, and overall health. We have seen results from these infusions in my bloodwork! For the first time in a year, my white blood cell count is on the rise! It’s now only slightly below what is considered the normal range for a healthy person. This shows my immune system strengthening, which is great news.
So the plan is 4-6 weeks of the rifampin, alinia, and IV infusions, after which, no matter what, I will be discontinuing all antibiotics indefinitely to give my body a rest and see how I level out when everything has left my system. With the extra day “off” I have since discontinuing the injections, I am looking forward to bringing yoga back into my routine, because I know how important exercise is for my recovery.
I am also happy to report that one week after my last injection, I had a great day, during which I felt excellent and was able to be active all day at a pre-Lyme level! Fingers crossed that more of these great days are ahead.