Friday, July 23, 2010
Mycoplasma and Asthma: My Diagnosis from National Jewish Hospital
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!