Friday, July 23, 2010
I'm back from my visit to National Jewish Hospital. I've got a pile of work to do here that is engulfing me, but I think this information is important to share. If you know anyone with unresponsive asthma, ALS, alzheimers, Lupus, Chronic Fatigue Syndrome, Crohn's disease, cancer, fibromyalgia, leukemia, rheumatoid arthritis, heart problems or other immune system disorders...they may have the same infection that I have. In fact if you or anyone you know suffers with one or more of these conditions, I HIGHLY suggest you read further.
Several months back I went on Biaxin for an ear infection. I found my asthma began to improve, so I did some research. I discovered a wealth of information about a bacteria I thought might have been behind my problems and brought it up to my asthma doctor. I went on a one month course of Biaxin to eradicate the bacteria, but unfortunately that wasn't long enough to kill it. Flash forward to this past Monday and...it turns out I was on to something.
So let me start with the smaller stuff. Quickly here is a synopsis of my diagnosis: allergic response asthma, severe allergies, chronic cough, vocal chord dysfunction and mycoplasma infection in the small airways of my lung.
I've learned new strategies for retraining my vocal chords and exacerbating my chronic cough. What's amazing is how simple these are! Here is some information about what I'm doing. Relaxation, pursed lipped diaphramatic breathing and learning to recognize triggers and reponses.
The allergies are pretty straight forward. I am basically allergic to everything...except for one strain of mold. So a daily dose of Zyrtec or even one in the morning and one at night during the worst times of year helps immensely. I'm going to start using a neti pot or a nasal rinse with a saline solution daily. I've been given a nasal antihistamine for use in the fall and the spring.
My asthma is not so straight forward because it is unresponsive to medications. What that means is that I have not improved my lung function at all in the 13 years since I was diagnosed with asthma. No matter how diligently I follow my medical protocol, I still can't breathe and I can't stop coughing. This is why I have been fighting for the past five years to get to National Jewish, because even the pulmonologists at UPenn couldn't figure out what was wrong with me. The consensus was that A. I was lying and not taking my meds or B. my airways were permanently remodeled because I didn't get treatment soon enough. Neither of these things is actually true.
I have a long standing infection with a stealthy, tiny bacteria that lacks a cell wall called mycoplasma. I have no idea when this infection started, but I've had asthma for 13 years. Everyone has been exposed to this organism. It is the cause of walking pneumonia. Some people, due to immune system compromise, become a perfect host for this organism to hijack their cells. Mycoplasma can literally hide in your cells without killing them. If it gets into your lungs, it can profligate and cause inflammation of your small airways and kick start asthma. If someone is predisposed to developing asthma, they are the perfect host for this bacteria.
In case you're now afraid to talk to me in public...once you've passed the initial infection, you are not contagious! I can't spread the bacteria, because it's embedded in cells in my lungs. Don't be afraid, I'm not Typhoid Madgy.
If this bacteria gets into your white blood cells and passes through your blood brain barrier it is believed to be a major factor in a huge swath of neurological disorders including: ALS, Alzeheimers, Lupus, Fibromyalgia, Crohn's Disease, Leukemia, Gulf War Syndrome, rheumatoid arthritis, MS...it is also a factor in cancer...and the list goes on. This bacteria invades your body and creates inflammation in the tissues, which is what has happened inside of my lungs. I keep feeling like I've been invaded by tiny aliens, because basically that's what has happened.
The scary thing about mycoplasma is that it's very hard to detect because it hides. I had to have a deep tissue biopsy, lavage and several blood and urine tests to show DNA evidence of this organism. I pressed for that biopsy, so make sure if you have similar issues you press too! Because we've all been exposed to it, we all show some evidence, most of us have some of this in our bodies, which is fine as long as our bodies can keep it from colonizing. Those of us with long standing infections who have serious health repercussions have to rid our bodies of the bacteria and that requires a 3-6 month course of Clarithromycin or Biaxin or another related antibiotic. In fact, this is the only class of antibiotic that is effective against mycoplasma. I'm taking 1000 mg daily. Once you start to kill this off, you'll likely feel pretty sick for a week or two, but that will signal that the bacteria is dying, so it's a good thing!
I know this sounds like a bunch of hoo ha...I mean why haven't we all heard of this stuff? What's the deal? If we all have it...shouldn't this be common knowledge?! I'm seriously thinking that there's no money in this for big pharma, so why on earth would they want us all on Biaxin and...gasp...for people with chronic medical conditions who buy their medications to get BETTER?! Yes, I like a good conspiracy theory. There are people who think this is a super strain of mycoplasma that was created as a biological weapon, which is another interesting theory. I think ultimately, since this is difficult to detect and treat and research is constantly improving, most doctors just don't know enough about it. Though mycoplasma was first discovered by LOUIS PASTEUR in the 1800s during studies with cows suffering from rheumatoid arthritis.
Please research this, share this, talk about this with your doctor if you suffer from a chronic condition that is potentially linked to this. Please know that if you don't fight for your health, you're going to be unlikely to find answers. Please also know that this is far more common than it is strange and many doctors simply don't know enough about it. It's far too easy for doctors to sit over their prescription pad and keep handing you drug after drug after drug than it is for them to dig deeper. It's far too easy for them to blame the patient than it is for them to take responsibility for finding answers. The system is currently financially unrewarding for doctors to dig deep. So it's up to you to. If they're not listening, fire them and hire someone who will. It's your health. Fight with every fiber of your being, you're worth it.
Here are some excellent articles about Mycoplasma, please read them and share:
If you Google this, you'll be blown away at how much information is out there!
PS: I am taking high doses of probiotics, eating yogurt to maintain the balance of good bacteria in my intestines!
Wednesday, July 21, 2010
It took a lot of years of attempting to fix chaos to realize that fixing chaos isn't possible.
I've come to realize that the things I say or do, even with the best of intentions, are filtered through other people's perceptions. I can not control that. Everyone sees everyone else through a lens. That lens is often clouded by insecurities, expectations, ego and past experiences. Although we can strive to be the best expression of who we are and to be mindful of the ways in which our being impacts others, we can not become someone else to make others happy and comfortable.
I think that's a really tough thing to accept. What we all really want deep in our most hidden heart of hearts is to be loved unconditionally. We all want to become free of feeling the need to be who other people want us to be. We all want to be loved exactly as we are, even in our most unlovable and difficult moments. We all want to be free to be ourselves without apology or explanation. We begin that journey by learning to love ourselves without judgments or filters or expectations. Then we can begin to practice offering that to others. The entire point of being on this planet is to explore the ongoing practice of unconditional love.
No matter what we do or how we do it, there will always be people who simply don't like us. It hurts to know other people don't like us, especially when they are people we desperately want to like us. Other people are often stuck in old patterns and old scripts and they simply can't see us clearly. Our job is to let go of our attachment to these things. We define ourselves, others can not define us unless we allow them to do so. We have to allow ourselves and others the room to be less than perfect. If we choose to accept the role of the 'bad guy' or the 'difficult person' simply because that's how other people have cast us, that is a choice we make. We can alternately reject these roles.
People will, if we surround them with our unspoken expectations, never cease to disappoint us. People reflect what we project upon them. We can gather evidence to fully support theories attached to our negative projections if we work hard enough at the endeavor. We all see, hear and believe precisely what we choose to see, hear and believe.
We are either victims of our past, our circumstances and the actions of people around us or we take full responsibility at every moment for our own reality.
I am, ever, learning to love myself and those around me unconditionally. I am, ever, a work in progress.
Judge less, love more. Words to live by. I am striving every moment to allow myself and others the room to breathe.
Saturday, July 17, 2010
Six years ago, during that same crazy year when my professional world fell apart, my asthma took a strange turn. I became so sick, I couldn't get out of bed for a month. I had a sharp, shooting pain in my right lung that felt like a rusty saw going in and out with each breath. The initial diagnosis was flu. I didn't respond to the antibiotics. The next diagnosis was allergic asthma on overdrive, so I was prescribed prednisone. Prednisone is a corticosteroid. Not the kind of steroid that body builders take to gain muscles, this is another form of steroid that is an extremely strong anti-inflammatory drug. Lots of folks take it for allergies, asthma, lupus, chronic infections, extreme cases of poison ivy or other rampant and unresponsive rashes, it's an immunosupressant, so folks who have immune systems on overdrive are often prednisone patients. Some people use it regularly, you will recognize them by their full moon shaped facial features. It makes you puffy, angry, agitated. Some folks feel a sense of euphoria and extraordinary energy. I had never taken it before. Within a few days, I began a descent into what can only be described as rubber room variety crazy. It was not, for me, a euphoric feeling. I was terrified. My brain already moves very fast, suddenly it was moving at a speed that resulted in my having to work very hard to get the words in my brain to slow down enough for me to speak. I wasn't getting better and after a trip to the ER and an accidental overdose of more predisone by the pharmacist, I was unable to sleep for five days.
Since I was up all night, I got on the computer and began diagnosing myself. Why the hell not, someone else had to have been where I was, right? My prednisone reaction was rare, for some people it is possible to enter what is called a steroid psychosis. It can even trigger latent bipolar disorder. Holy crapamole! The pain in my side was pleurisy. Pleurisy is an extremely painful blister-like occurence on your external lung wall. It was a common condition in the Victorian Era, because so many people suffered from consumption. Why I was so tired and having so much trouble breathing, I can't say. I didn't solve that part of the equation. I did manage to communicate to my husband that the drugs were making me crazy and I thought I had pleurisy. He's a good man, he listened and he advocated for me. He called the answering service and demanded the doctor contact me immediately.
The doctor dosed me off of the steroids and concurred with my self diagnosis of pleurisy and recommended aspirin and a heating pad. Really?! Good grief.
Had anyone listened to me from the first office visit...I'd not have been down that scary path. Not one person addressed the pain in my lung. Amazing, huh? I think there's a general feeling among many doctors that patients, particularly female patients, exaggerate their pain. I had natural childbirth, I know what pain is, people. After this episode, my breathing did not fully improve and I have lived with chronic unresponsive severe asthma since. I was first diagnosed with asthma when I was pregnant, but I didn't take it seriously until this event. It was one of those 'long time coming' scenarios, but this forced me to push for better answers from my doctors. Since then we've been working to figure out what's wrong with me and how to get me back to some semblance of quasi-normal.
So here I am, in Denver as an outpatient at National Jewish Hospital. The doctors, nurses, staff...everyone at this hospital has been amazing. I mean like 'what the hell is in the water here?' amazing! They've listened. They've taken copious notes. They've dialogued. They're treating me like a medical mystery and they're actually excited to solve it. They're looking at every possible condition and they're explaining everything to me in detail. I feel like I'm in some wonderful alternate medical reality. Except for the medical tests, which have not exactly been a fiesta, but I'm willing to do what it takes to get answers.
My patient and loving mother has been at my side. She left her little dog Thelma with a good friend and she's been with me every step of the journey. It's not easy for two strong, smart, snarky, fiercely independent women to spend 7 days of uninterrupted time together, especially when one of them is stressed out and extra snarky...one of them being me. She deserves a medal for her service on my behalf. I hope my love and gratitude will suffice. Thank you, Mom. I love you.
It is that strong, smart, snarky, fierce independence she instilled in me that gave me the tenacity to demand answers and get to National Jewish which is another reason I owe my mother my gratitude. It's so easy, because the deck is stacked that way due to insurance companies and legal factors, to give up. Doctors simply don't have time to deal with medical mysteries. They're not making enough money for it to be worthwhile. They can't afford to risk a misdiagnosis. It's easier to hand you the meds, pat you on your head and send you on your way.
I am so grateful for the staff at National Jewish. What a revelation! I'm so excited to get my diagnosis on Monday! I have so many tragi-comical stories to share with you about my journey here. They'll come when I get home. I have to rest now. Yesterday's bronchoscopy with biopsy and lavage has me very tired indeed.
The good news, the very good news, is that if there is any place on earth where I can finally get real answers, this is it.