I have suffered from yeast/candida overgrowth as long as I can remember–at least since puberty. It used to take the form of vaginal infections but at some point in my twenties, about a year after child # 2 was born with a nasty case of thrush that lasted about six months, my candida overgrowth took up residence in my mouth. At first, the doctor’s fought it with liquid nyastatin, an anti fungal, which eventually triumphed over the thrush in my son’s mouth. For me, it never worked for long. Somewhere in my early thirties, however, my new doctor suggested trying Diflucan, an oral anti-fungal in a pill form. Whenever I took a Diflucan, it always seemed to knock out my thrush within 24 hours. But the thrush always came back. It got to the point where my doctor gave me a 12-15 count refill at the time of my annual physical so I could just go to the pharmacy and get a Diflucan whenever my mouth started to grow fuzzy and white (and sometimes itch). It was a good day when the pharmacy would allow me six pills at a time–not that I’d take them all at once but it kept me from having get to the pharmacy every time I needed a pill.
I even took Diflucan a few times during my pregnancy with J. I wasn’t cleared for the first trimester, but as soon as my second trimester hit, my midwife gave me the go ahead to take a Diflucan because I was convinced my out-of-control thrush was, at least in part, causing the crazy, awful morning sickness (that lasted all day and night), which I never experienced with my first two. All in, I took three Diflucan pills while pregnant. Not long after J. was born, Diflucan was found to cause some birth defects. As I understand it, it is no longer given to pregnant women. It is hard for me to now not wonder if somehow the Diflucan interfered with the proper development of J.’s middle ears and molars.
In the years following J’s birth, I began to notice that I would feel extremely run down after taking Diflucan. Perhaps this was merely a yeast die off reaction. (Lately, I’ve learned to not discount symptoms as mere die off reactions–not everyone is strong enough to detox). Overtime, my symptoms upon taking Diflucan were nearly as uncomfortable as just living with the thrush. I began to experiment with going longer and longer without taking the dreaded drug. Early last June I spent some time in a hot tub, which I’ve long known is a total “no no” for me, along with scented bath oils and soaps. Within days (or hours) I had total yeast overgrowth in my mouth and vaginal area. Fun times. I had been reading about the battle against yeast in one of the many “Kill the Yeast” type of books that I have in my library. This book instructed doctors to prescribe numerous rounds of Diflucan, day after day for weeks, to ensure that all of the yeast is killed. At that time, I had a small stock pile of Diflucan pills saved up from extending the time between doses. I decided to self-prescribe a mounted daily attack on enemy yeast (don’t stop reading here and try this same thing at home). So on June 6th I took one Diflucan and on June 7th, I took another. And on June 8th, I couldn’t get out of bed. I cannot really describe how bad I felt but it was likely the worst I’ve ever felt. Ever. I couldn’t tolerate light, I was so weak I could hardly stand, my head was in such pain I wanted to amputate it, and my digestive track made sure that I did in fact have to manage to crawl to the toilet every hour or so. I could hardly drink water even. I was more exhausted than I’d ever felt and yet, couldn’t really sleep. It felt the life force leaving me. I knew that if I felt that way long-term, I’d want to die. It wouldn’t have been an existence worth maintaining. Fortunately, Hannah was around to help out and between Hannah and Chris, the care of Josh was covered for a few days. Chris would sit by my bedside and say things about going to the doctor, but I couldn’t move and felt like doctors had yet to help me with any of this stuff. So I am sure that the yeast experts would tell me that I was experiencing extreme die-off symptoms (and I even thought that at the time) but even if this were the case, I am pretty sure that place I found myself one June 8-10 of last year was not healthy or desirable, even in the name of killing off yeast ( I’ll get into this more extensively in my next blog post).
On the first day that I felt well enough to get out of bed for a few hours, I went to a chiropractor that I had met at a yoga training about six months earlier. After a weekend spent in Yin Yoga training together, she took me aside and told me that she thought I was in adrenal fatigue. I discounted her diagnosis at the time, but had in fact spent the last 6 months watching my energy dip lower and lower. When I raised this with my MD, she offered anti-depressants. I was quite certain I wasn’t depressed (been there, done that in my twenties). In my desperation (and my frustration with all of the MDs who had failed me), I took the first appointment at this chiropractor’s office that morning. After about an hour of telling her my history and crying about how hopeless I felt, she told me that Diflucan actually is sort of like an antibiotic. It goes to work and kills fungus but it also wipes out all the good stuff that you need as well. She told me to stop taking Diflucan, even if I did nothing else. Well I didn’t do nothing else. I’ve done a ton else (will give detailed report out in near future post). I’ve gone to lengths I never thought possible to try to get my health back. I feel like I am getting closer on that front, but still not there. At the very least, however, I do believe I understand my yeast issues better than any medical doctor has, including the medical doctor I began seeing last November (’13) who also practices functional medicine. She too wanted me to take a two-week course of Diflucan. I am so glad I didn’t. I am so glad I stood my ground. And now, I am happy to say that I am one-year clean of Diflucan today. A small victory, but a victory nonetheless.
[A]nd the end of all of our exploring shall be to arrive where we started and know that place for the first time.
I could make this post about music, since it’s Music Monday. And if I were to make this post about music, I’d tell you how, right now in the pouring rain, I am listening to Fleetwood Mac’s album The Dance, which was once a new album of this iconic 70s band’s songs revisited. And now the “new” album, The Dance, has become an old album (and I too have become old). And as I sit here with the relentless rain outside my window, I am moved by my nostalgia over the time in my life where I had nostalgia over the song Dreams, as heard on The Dance, because it reminded me of trips, driving across the vast, flat entirety of North Dakota to reach my grandparent’s home in Crosby, ND with my family in our gray Rambler station wagon, me hiding under a doll’s blanket, afraid of the thunder. I veritably tremble when I see that Landslide is ahead on the album. The song, Landslide, carries personal nostalgic value in my life and it is a nostalgic song about nostalgia. How can that all be? I’ve been reading too much Dr. Suess because this all seems entirely possible.
Nevertheless, this post is not about music. It is about Josh’s ear health.
So last Monday, Chris, Josh and I left our house at 6:30 am for Josh’s 8:30 am-awake MRI. I had prepared Josh for the MRI by having him watch a few videos on Youtube. You can find these videos on my Sensory Processing Disorder Pinterest page. It seemed that Josh was willing and able to sit for the MRI. We had completed all of the forms and had gone around and around with the nurse about the fact that Josh was not to be given any contrast for this exam. After a few phone calls, she finally believed me. Finally, we were walking into NASA’s control center (okay, that’s what it felt like outside the huge 3.0 MRI seen through the window), Chris in his track suit and me in my yoga gear, because these were the only non-metallic clothing we could find. Once we got in with the MRI technician and he read through our forms, he told us that he didn’t think Josh could have the MRI because of his titanium PORP. I told him I had verified with our ENT’s office that the PORP was indeed MRI safe. He told us that while it was definitely safe for a 1.5 strength MRI, it wasn’t for a 3.0 strength MRI. He shooed us out of the room to call the head radiologist.
We returned to the waiting area. Twenty minutes later, he found us and told us that the MRI was safe as long as Josh was perfectly still, but if he tried to sit up even slightly, the PORP could move. He clearly didn’t want to risk it. I had had my own misgivings about this same issue the week before and hence, had done extensive research in this regard–even so far as to look at the information pages provided by the manufacturer’s of PORPs. In spite of our ENT’s reassurances, I still feared the slightest shift of the PORP towards the inner ear–it could do loads of damage. The lab technician clearly was against going ahead with the MRI and told us he could have us talk to the CT scan technician about our concerns over radiation. It was still an hour until our back-up CT was scheduled (at 9:30 am) and so we agreed. We were shuttled into the CT scan room and she put Josh up on the CT machine, giving him a sticker to add to the inside of it. He seemed totally comfortable and I realized the CT technician had been told to just go ahead with the CT. In a way, it felt like the MRI technician had made the decision for us and I might have been irked, but instead felt relief. The CT tech told us that she was very certain she could quickly get the kind of picture of the temporal lobes that our ENT needed. And so, we just went ahead with the CT and, 30 seconds later, it was all over and we were leaving the hospital.
I have to admit, as easy as it was, it was a bit of a “let down.” After all of those months of research and worry, we ended up allowing Josh the radiation hit by having the originally ordered CT scan. Hence, the admittedly overused T.S. Eliot quote above. The upside of the CT scan was that it wasn’t at all scary or emotionally damaging for Josh. In the end, maybe that’s what most mattered. At least, that’s what I am going to believe because, at this point, there is nothing I can do about the radiation hit of this second of Josh’s CT scans. It is done.
We met with Josh’s ENT the following day to go over the results. It was a long 24 hours to wait for the results, but at least Chris and I didn’t have to go over to the clinic dressed like PE instructors. After an even longer half-hour wait for our ENT in the examining room, he came in and asked why we didn’t get an MRI. I explained to him the radiologist’s concerns. He said that those concerns were ridiculous, but he still looked it up on Wikipedia of all things. Wikipedia! He told us the next time he’d send us to a different hospital for an MRI. Thankfully, however, he got what he needed from the CT and, at least for the foreseeable future, there is no need for an MRI.
Our ENT showed us that both of Josh’s middle ears were completely filled with fluid and so was his left sinus cavity. What should have been all black (showing air) was all gray on the scan. He is hopeful that the fluid is the cause of Josh’s present decline in hearing. He also did not see any evidence of cholesteatoma. I take some comfort knowing that CT scans tend to provide more false positives (and MRI’s more false negatives) for cholesteatoma. At present, Josh is on a 20-day course of oral antibiotics to see if this will clear the fluid. We have another hearing test set for early June. I am hoping that the antibiotics clear the fluid. Josh has never been on oral antibiotics before, although he did have one full-spectrum antibiotic given intravenously in the ER when he was 2.5. I am not a huge fan of antibiotics for many reasons (hopefully a subject of a future post) but I do recognize that antibiotics still sometimes are necessary. If the antibiotics don’t work to clear the fluid, we’d be looking at PE tubes once again. I am very dubious of PE tubes, given that Josh’s ear canals are so small that our previous ENT never actually successfully placed the PE tube in his left ear and the right grommet, although successfully placed, ended up ruining Josh’s original ear drum. I would have a hard time accepting the potential destruction of Josh’s rebuilt right eardrum with another metal grommet. But we are not there yet. For now, “just antibiotics” beats surgery any day.
I am grateful. I am hopeful.
My son Josh had PE tubes placed at 5.5 months. He had never had an ear infection at the time but the tubes were inserted during surgery because his ABR showed a 45 decibel loss (mild-moderate reverse slope conductive loss) in both ears. It was believed at the time to simply be fluid behind his ears and before any scans of the ears were done, he had the ear tubes placed. The tubes didn’t increase his hearing capabilities. In fact, when he was two, we switched ENTs and our new ENT told us that the left tube had never actually made it into his eardrum. Because Josh has abnormally small ear canals, the smallest, metal grommets were used and the right grommet left a permanent perforation in Josh’s eardrum that was fixed at age 2.5 with a tympanoplasty.
If I could go back and do it all again, I would request an MRI or CT scan BEFORE the tubes were placed. Perhaps then we would have avoided the tubes–at least it was a possibility. Now, we are being told that Josh has fluid in the middle ear again, diagnosed by a CT. He is on a lengthy course of antibiotics, but if that doesn’t clear the fluid, tubes will be recommended again. I am loathe to have another go at tubes. I will very seriously weigh this decision this time. To that end, here is a NY Times article I found discussing the necessity and utility of PE tubes: