I have Lyme. I’d like to not have it anymore. I also just want cake.
January 29th I traveled with my father to DC for my latest appointment with Dr. J. – one year and 4 days since my initial appointment with him. It felt… special in a way. It felt… a long time coming.
In the waiting room… waiting.
After the usual question and answers, the going over of my last cycle which these days includes 12-15 days of treatment and just over two weeks off all treatment medications, and the discussing of symptoms during both, it was determined I would do one more cycle of IV antibiotics. After feeling around my liver and spleen it was also discovered that… wait for it… wait for it… SWELLING UNDETECTED!!! For the first time since my initial appointment I have not had a swollen liver and spleen. Obviously, this sounds great as swollen organs are never a good sign, but this is particularly monumental because emerging research shows that among Lyme Disease and other immunocompromised patients, those are hallmark signs of the presence of Babesia. I have been fighting this darn blood parasite for 10 months now through two different doctors. To hear that it was clearing up was… joyful to say the least. To hear that I didn’t have to continue on the most disgusting drug of all time – Mepron – was even more joyful. I really was getting to the point where trying to swallow two spoonfuls morning and night would cause me to dry-heave just measuring it out. To not have to refill that drug at the pharmacy anymore… just… no words. To hear that we could begin cutting back on the four other Babesia/Anti-Malarial/Anti-protozoal drugs we have been throwing at it was… just such good news. I would continue on with just the Daraprim and Enula. Side-note: I truly believe Daraprim was pivotal in my progression to wellness. It was difficult to tolerate, but after just 4 rounds, it seemed to do the trick. In combination with the other Babesia drugs it finally got the darn things to wave the white flag. Leaving Dr. J’s office after that appointment I was straight up skipping – mentally. Physically I am still granny slow. I didn’t care so much I had just one more cycle to do… normally hearing the words “now for your next cycle” sent me straight to a dark, dark place. This time, I held that last IV medication cycle like a majestically glimmering gold medal.
So fast forward to now. I have completed Cycle 12, the last IV antibiotic cycle in this great journey of Lyme treatment I am taking. Cycle 11 was horrible, but once it cleared, I felt I had finally turned that corner Dr. J kept mentioning we were working towards but that I never believed would come. Cycle 12 was much easier. Less herxing? No Mepron? Doubled up on Marinol? Whatever it was, it was easier.
BUT… BUT…We did introduce an oral antibiotic called Rifabutin. Typically a TB drug found to also target Mycoplasma and Bartonella. I was never really sure if I had Bartonella, I’m quite positive I have Mycoplasma (most do), but after a week on Rifabutin… the Bartonella became clear. Great, another co-infection to deal with. Taking this drug upped my anxiety issues, my panicky feelings, and within a day of taking it I developed painful sores in and around my mouth… roof of my mouth, corners of my mouth, and patches of raw flesh emerged on my lips. Eating became quite the challenge. Bartonella is known for two things – psychological problems and skin problems. So… I guess that confirms that. If there is one convenient yet so un-fun thing about Lyme Disease, it is that the herx is one of the best diagnostic tools we have so far. Thanks lagging research. Thus, we medicate, and wait. See what happens. Go from there. I did my final antibiotic infusions in bed last Thursday night and after unhooking the empty bag of Tigecycline from my line, I held it and began to sob. Still thinking about that moment brings tears to my eyes. I made it. I made it through that IV program. The ending and culmination feels right.
Holding my last dose of IV Tigecycline before infusion. THE dose I will always remember.
Anyways, regardless, I am feeling much better. I still have my picc line in so that I can infuse bags of fluid to help detox over these next few weeks and to help with the transition to an oral antibiotic program – which I am told is much less intense… but we shall see. Hopefully I get the picc line out in the next few weeks and then I will really feel accomplished. Truly, it seemed this day would never come. The challenges and sheer brutality of aggressive IV antibiotic Lyme treatment is beyond words. Really, I’ve looked at thesauruses all day long – no words adequately describe my experiences. I have come from war. I have scars to prove it. I have nerve damage and even minor brain damage (or as Dr. J. calls it, “scorched ground”) to prove it. All will heal in time. But this moment, I am savoring for now. I have two weeks off and then starting the beginning of March, I move on to the oral program.
Here’s to beating Lyme into remission. One day at a time.