April 11, 2013

It is certainly a relief when a medical trip goes off without a hitch. During a quick visit to Kansas City a couple of years ago, I ended up in the emergency room with an abscess near my port site. The ER was nearly empty, the doctor was a hunk (albeit, engaged, just my luck), the nurses were efficient. Everything was about as splendid as can be in such a setting. It was decided I should have a dose of a precautionary antibiotic. And then I would be on my way, right? Wrong. I vividly remember flipping through my Vogue magazine, admiring Emma Watson’s brand new pixie cut when I started having a burning, itching sensation on my scalp, that rapidly progressed to cover my whole body. I had Red Man’s Syndrome, a miserable reaction we have since realized I have every time I am given Vancomycin. So my dandy evening in the ER transformed into a mess that lasted nearly the entire night.

Thankfully our trip to Kansas City last week was much less eventful! The weather was lovely, so I enjoyed spending a bit of time strolling about the Plaza. And I scored some new pajamas. A very successful outing, indeed!

Oh, but I suppose we did not travel all the way to Kansas City for a pair of jammies. My appointment with Dr. Brewer went well. Last year he had me tested for mycotoxins to investigate whether or not toxic mold exposure could be playing a role in my illness. When I was 12 years old, I returned home from horseback riding camp with a staph infection. The next day, I learned that the horse I had ridden and cared for died overnight! This has always been concerning, and it led Dr. Brewer to suspect that I may have been exposed to toxic mold in that barn. When we asked if toxic mold exposure could kill a horse, he responded that he believed it could.

I did indeed test positive, but, because the antifungal medications used for therapy could be harmful to my liver, we decided to delay treatment in order to see how some of his other patients responded. I’m not exactly a first string guinea pig. I sit on the bench and give the other guinea pigs Gatorade.

I always feel that my visits with Dr. Brewer are worthwhile. His devotion to his patients is nothing short of remarkable. He has a little thing called common sense that, believe it or not, many doctors lack. Such a lot of physicians walk around with their nose in their textbook. In their mind, if something isn’t found in the book, it doesn’t exist. Not so with Dr. Brewer. He is always searching for a discovery that could provide relief for his patients. Over the past year he has been authoring a study on the correlation between toxic mold exposure and Chronic Fatigue Syndrome (CFS). He has identified three groups:
1) HEALTHY people WITHOUT toxic mold exposure;
2) HEALTHY people WITH toxic mold exposure;
And
3) UNHEALTHY people WITH toxic mold exposure

He has found that nearly every single one of his patients with CFS has tested positive for mycotoxins. And what makes the difference between the healthy people and the unhealthy people who have both been exposed to toxic mold? Most likely it is genetics, probably even mitochondrial disease related, that makes some people susceptible to becoming sick due to this exposure.

But he has seen a wide variety of responses to treatment with antifungal medications. Some patients have improved greatly, some have found minor relief, some felt no different, while still some had to cease treatment due to side effects of the harsh medicine.

But recently an infectious disease doctor from New York contacted Dr. Brewer, as she has been treating patients with CFS and toxic mold exposure since 2010. Her research has resulted in findings very similar to Dr. Brewer’s, only she has found better success with her treatment protocol. She prescribes antifungal nasal irrigation for her patients, which not only seems to irradiate the mycotoxins more effectively, but has the added appeal in that it does not come along with the side effects of systemic antifungals.

Although I do not have CFS, some of my symptoms fall within the criteria of this condition. And Dr. Brewer’s hypothesis that mitochondrial disease plays a role in the susceptibility of one becoming ill from mold exposure is highly intriguing. Dr. Brewer has just recently begun treating some of his patients with the nose spray protocol. If his other patients respond well, it is definitely on my consideration radar. I will keep you posted.

Now, enough infectious disease talk! Strictly speaking, it kind of grosses me out. I’ve used the world “mold” a few times over my comfort level. And “nasal irrigation” brings to mind a hovering crop duster spritzing fungicides on a field of nose hairs. Moving on!

I am already utterly exhausted from travel, but my hectic schedule continues… If you remember, my central line broke just a few days before Easter. Children’s Hospital has been fantastic in their efforts to accommodate my complicated requirements for the procedure to place my new line. We are meeting with my anesthesiologist today. This doctor did the anesthesia for my bone marrow biopsy in September. She is wonderfully sweet, and I just loved her. She read up on mitochondrial disease before my biopsy, and I actually did not have paralysis! Just before that procedure I asked her what her name was. I informed her that I always try to remember the names of my very favorite doctors. Some people say I am a suck up. Untrue. I just reeeeeally love and appreciate kind people. And this time my habit came in handy, because I knew her name so that I could request that she be my anesthesiologist this week, too!

Mom and I have been researching various disorders that could cause reactions to anesthesia that resemble the paralysis that I often experience. People with mitochondrial disease, channelopathies, hyperkalemic periodic paralysis, hypokalemic periodic paralysis, and myotonia congenita all have an increased risk of developing malignant hyperthermia while under anesthesia. This can become very dangerous in a matter of minutes, but it is also treatable if the doctors are prepared. So my anesthesiologist is about to get an earful of questions as we attempt to address all of our concerns.

Someone from interventional radiology is going to show me my central line choices as well. I still haven’t made the tough decision as to what type of line I will have placed. I know I want the same kind that I have currently, but fear that it may break again. I don’t want to talk about it anymore! But I’m going to have to make my mind up pretty quickly here!

And tomorrow I have to be at the hospital at the butt-crack of dawn for the surgery. If all goes well, I will be home cuddling my Alice Eloise tomorrow night. But her Aunt Krista is on standby to take care of her should any complications arise.

Well, I am running (figuratively speaking) out the door to head to the hospital! I don’t have enough time to tell any cutesy stories today, but rest assured, there will be plenty of silliness in my next post.

I would appreciate it so very much if you could remember me in your prayers tomorrow!