Well shame on me for not writing for more than a month now. In the past, writing has been so cathartic for me, but I have to admit, this past 12 weeks antibiotic cycle has been the worst thing I have ever been through in my life. What I have experienced, what I have endured, has been complete hell. It's so bad and so well, embarrassing, that I am contemplating if I really can write the whole truth. It's been the biggest nightmare of my life.
I knew this would be an awful month and Dr. J warned me that it would be. I had done this protocol before, but then it was two weeks on, two weeks off. This time it was three weeks on then three weeks off and repeat. During my last visit, it because apparent that the Lactoferrin/xylitol addition on days 1-8 are incredibly effective in scratching the biofilm open and this time my Babesia symptoms were released in a hellacious manner.
I was angry again, bordering rages, which I was barely able to fight off, my thighs were in excruciating pain, I was cathartic, and well, all of the symptoms that come with Babesia were back - my psoriasis, raging daily headaches, ACA, drenching night sweats so much so that I had to change my clothes in the middle of the night and change the sheets every day, and a level 9 of 10 pain for several straight weeks that stemmed from my sacrum to the very top of my cervical spine. Yep, Babs came back.
Dr. J explained that the biofilm had broken open (good) and released Babesia nests in my spinal fluid, connective tissue, and brain. Thankfully, my liver did not seem to be affected at the time. He warned me about this protocol, that because Babesia can be dangerous and even deadly for people with weak immune systems, that we had to go against it full force, which meant six antibiotics, two of which were for Malaria, another two of which are sometimes used for chemotherapy, and the others to ward off the Lyme spirochetes from reemerging. He warned that there would be an increased need for assistance. Man, was he right.
I returned home and started my meds. Week One would be the worst, i knew that. And it was bad. The nausea was indescribable, despite taking Zofran and Marinol (anti-nauseas) around the clock to fight it. I was literally in bed the entire week. I might have taken 1000 steps that whole week and that was just to and from the bathroom. Week two was just two antibiotics and I felt a little better, but the fatigue was just immeasurable and I slept through yet another wasted week of my life. Week three was coartem week, an antibiotic which cannot be mixed with other antibiotics. And it felt like I had the worst flu of my life. But I got through it.
And now I will share it all. Because people need to know what this disease does to us.
My holiday came around and I had to continue with Miocin and Rifabutin, because I cannot manage my pain during the off-weeks. These infections are just RAGING in my body. During the last week of my 3.5 week holiday, I woke up at 4a.m. one morning (and yes, I have decided to share this for my fellow Lyme friends, fully aware that my regular friends who are reading this will be so grossed out and horrified that I may never find the love of my life) I woke up soaked in urine, from just under my breasts and all the way down my nightie which ended mid-thigh.
In the past, I have awoken to the start of peeing, but I have always made it to the bathroom and it was never on a holiday week. I have never been so devastated in my life. To be 38 years old and go through that alone, it was the most horrible night of my life - or so I thought. I got up, pulled myself together, got in a bath and then threw the sheets and mattress pad in the washer. I went back to sleep with nothing on the bed, as my comforter had been wet too. It was, for me, unimaginable.
I was pissed that this was happening on a holiday and couldn't believe this was my life, but what the following week had in store was truly like a horror movie, the absolute most emotionally excruciating experience I have ever been through. I started the second round of the same three week Babesia protocol. The first night I was very nauseous. I had tripled my dose of anti-nauseas and was eating and taking them 1/2 hour before dosing. But it didn't work. For the next 4 days, I lived a life I would not wish upon a captured terrorist.
I was laying in bed with that squished face you make when you know that you might have no other choice than to throw up. And so I went to the bathroom and started to violently heave for about 5 minutes. Thankfully my mother was here to spend the night, just in case, and she was there to hold my hair. And what happened during these 5 minutes I wish I could forget forever. I was vomiting so violently that I lost control of my bladder and my bowels and peed all over the floor WHILE throwing up and wailing and then I pooped in my pants. Diarrhea, as we all know is the norm. Belligerently wailing, screaming so much that I became incoherent. It was pure devastation. I could not believe this was my life. It happened again during the week and I was terrified each time I went to throw up. I threw a lot of things away that week, cleaned furiously with bleach, and scrubbed myself so i almost bled. I have never been so disgusted in my life. Thankfully, the week ended on Friday, I continued to vomit through Saturday night, but the rest of me was again under control.
I wondered if I had a bladder infection and went to the hospital for a test and a regular CMP/CBC panel which I do every two weeks. It turned out that my bloodwork was showing pancreatitis and an enlarged liver, both with possible major damage. I was scared to death. Dr. J ordered a CT scan,but that was a week later and by then, while I was still nauseous and experiencing great pain in my sacrum that is impossible to even describe, my Ct scan report thankfully came back normal.
That was a great relief, but the pain, now a 10, in my sacrum was disturbing every aspect of my life. Laying down, sitting up, walking - it was all excruciating. And so two days ago I went for an X-Ray on my spine to see if I have acquired more degenerative disc disease. I already have it in my lower cervical area (my neck), but I am suspecting it now in my lumbar spine, all the way down where your hips attach. I do not have the results yet, but I am moderately terrified that I will again get test results that will show that i am rapidly aging before my time. Of course I try to create the reality that the test will be fine, but it's hard when you are in so much pain.
Dr J took me off my week 3 meds until the CT scan came back and this morning just finished my week of coartem again, bringing back the flu, as I lie here, barely able to move.
I had a visitor this weekend, my blue sky, and he lit up my world again. His visits always take me to a place where I can foresee a happy future, one of family, cooking again, having a real life. He is so special. But then the coartem kicked in and I was miserable again. I am just so sick of it I could scream. And I do.
Thankfully, I survived Christmas and Mini had a magical couple of days. I really hope that those of you without Lyme will be able to comprehend that what happened this month is not normal. It was gross and horrifying, but not like anything I have ever experienced. I go back to Dr. J on Jan 7 and I suspect he will be incredibly surprised and a bit horrified by my story. The nurse seemed to be a bit freaked out when I called, so please, while this was a nasty entry, know I am still normal and thankfully I do not go through this kind of suffering, loss of control of virtually everything at once, ever. As you can see, I am terrified about posting this. Perhaps subconsciously this is why I haven't written, but it's only fair, as I honor my promise to reveal it all.
We need HELP. And so I share the severity of this disease and treatment. I hope you will understand.
