Caveat: This is based on my personal experience with unresponsive chronic cough variant non-eosinophilic asthma and mycoplasma pneumoniae infection. The content of this post is based on my research, experiences, and opinions. If you have severe asthma and you are steroid resistant, this may be of value to you as you seek treatment. If you don't have asthma but you have a chronic disease, there may also be something of value for you here. If you are seeking answers and feeling frustrated by your chronic disease, you are not alone. This could be a piece of the puzzle you need to find better pathways to treatment. Caveat: I am not a doctor nor a medical expert.
14 years ago I got sick. The doctor thought it was the flu, or a sinus infection followed by bronchitis, or maybe severe allergies, or maybe an asthma episode. I went back to the doctor multiple times because I was not getting better. I felt like I was breathing through a cocktail straw. I was coughing so much I could not catch my breath. Sleep proved elusive. I was exhausted. I had intense plueritic (lung lining) pain in my lungs. I tried over the counter medications. I was given prednisolone, it did not help. I was given a short term course of a strong antibiotic, it did not help.
I was told that my lungs sounded clear. I had x-rays, which looked clear. I have had a CT Scan, which did not show anything. When they tested my breathing, it showed that my lung function was severely compromised. I responded to breathing treatments, but only temporarily.
After a month of not being able to get out of bed, I started to feel better, but not 100%. I got my energy back, my lungs stopped hurting, but the cough lingered. At that point, I was given two inhalers, a short term bronchodilator and a long acting two part medicine with a steroid/bronchodilator combination. I proceeded to try a variety of inhalers and medicines over the years, but nothing seemed to alleviate my symptoms. I had a chronic cough and severe unresponsive asthma, and no clear answers as to why.
Any of this sound familiar?
Maybe you are prone to bronchitis, ear infections, and sinus infections. Your lung function does not improve no matter what medication they give you. Your cough becomes more productive and persistent as time progresses. The doctor may suggest that you're not taking your medications, even if you are. They may refer you to an ENT, asthma doctor, and Pulmonologist. This will take you on more rounds of questions, tests, and probably more medications. These will prove ineffective. This may take months or years of going from one doctor to the next starting over from square one and getting no answers.
What is happening to you is most like a factor in a host of chronic illnesses including RA, Crohn's Disease, MS, Fibromyalgia, Epstein-Barr, Long Term Sinus Infections, Hashimotos Thyroiditis, Chronic Unresponsive Asthma, CFS, Lupus, ALS, Parkinsons, Lyme, Leukemia, Alzheimers, Heart Disease, Steven Johnson syndrome, Guillain-Barr, Psoriasis, Exzema, ADD and ADHD, CMV, COPD, Cystic Fibrosis, NTM, Encephalitis, Autism, Meningitis, TMJ, Pelvic Inflammatory Disease, GERD, Chronic Cough, and certain Cancers. It can cross the blood brain barrier and the cell wall. It is stealthy, it is tiny, and it is persistent. A majority of people have been exposed to this bacteria, but if your immune system is compromised, it can colonize in your body, partner with other bacteria, and create the aforementioned diseases. Scans, blood tests, and x-rays will not show mycoplasma infection. Mycoplasma are the smallest known living organisms. They colonize your cells without destroying them, because they lack a cell wall and nucleus, they act as a parasite. Think of this as a tiny zombie invasion. Mycoplasma pneumoniae contain an adhesive protein that attaches itself to specific receptors that are located at the bases of cilia on the epithelial cells.(12)
They hide from detection and from your immune system.Mycoplasma bacteria are often found as co-infections. They combine forces with other microbes for stealth invasions. There are over 200 kinds of mycoplasma and over 23 kinds that infect humans. 30-70% of all people carry one or more mycoplasma bacteria. The general breakdown of tissues by these stealth microbes accelerates the aging process and is likely a primary factor in many, if not most, chronic degenerative diseases.(5)
How do you find out if you have this infection? For your lungs, the only way to definitively test for this is a bronchial lavage and bronchoscopy. Regular tests are mostly inconclusive. Mycoplasma is a common contaminant of lab samples. Diagnosis is difficult. If you are not treated properly, this bacteria can create a long term chronic colonization and that's when it gets tricky. Mycoplasma invades your cells, Hydrogen peroxide and superoxide radicals (O2–) excreted by the attached organisms cause oxidative tissue damage.(1) Mycoplasmas have been nicknamed the “crabgrass” of cell cultures because their infections are persist. Mycoplasma must scavenge lmost all of its nutrients from its host by breaking down host cellular tissues. It has an affinity for mucus membrane systems and cilia and once in the body creates a kind of nutrient starvation in the host which results in a wide range of symptoms... (12)
People who have steroid resistant asthma may have a long standing mycoplasma infection. I believe, based on my experience, that this infection is the root cause of non-eosinophilic asthma. That's the medical term for asthma that is not allergic. Allergic asthma is an eosinophilic inflammatory response. Non-allergic asthmatics are having a neutrophilic inflammatory response. Eosinophils are a type of white blood cell that play a part in allergies, asthma, and parasitic infections. Neutrophils are a type of white blood cell that respond to infections. Severe asthmatics demonstrated a twofold higher concentration of neutrophils in lavage than either the mild-moderate asthmatics, or the normal controls (p = 0.032) among the groups, (p < 0.05 between the severe asthmatics and both controls.)20 People with COPD also have elevated neutrophils and low eosinophils.
As a child, I had allergies and many respiratory illness events, but I did not have asthma. My asthma was diagnosed when I was pregnant at the age of 34, but it began after an extreme respiratory event in my early 30s. I didn't realize this at the time, but looking back, that is when the chronic cough began and most likely my first mycoplasma event. Since being diagnosed and after years of standard asthma treatment, my lung function has remained severely compromised and unimproved. I am allergic to everything, almost, so the initial assumption was that my asthma was the eosinophilic type. Eventually we figured out that it was not. I do have allergic airway responses, but they are not the root cause of my problem. One way to discover this is a FeNo score, high FeNo scores are associated with eosinophilic asthma, low scores with non-eosinophilic asthma. Ask your doctor for a FeNo test. If you have severe steroid resistant unresponsive asthma and your FeNo score is low, then you likely have non-eosinophilic asthma. People with non-eosinophilic asthma are steroid resistant, which means the normal approach of oral or inhaled steroids is ineffective.
Have your doctors test you for every possible thing that might be wrong. However, if you have been tested extensively, tried a variety of treatments, and are not responding, I would ask them to test for mycoplasma pneumoniae, mycoplasma fermentans, and chlamydia pneumoniae. These tiny bacteria just might be what's making you sick. You will need a bronchoscopy and lavage if you have asthma, which are surgical procedures. The current treatment is a long term high dose course of a macrolide (500-1000mg of Biaxin a day) or floroquinalone antibiotics. Depending on the length of time you have been sick you may need to take these antibiotics for up to a year or even two. It's important to take a probiotic supplement simultaneously to help prevent the loss of beneficial bacteria. Treating a mycoplasma infection once does not mean you will never get it again, in fact it is probable that you will. Once you know the signs and symptoms of a flare up, you can start the antibiotic course sooner and if you address it earlier, stay on it for a shorter length of time. There have been studies that show a medication prescribed for psoriasis may also be effective in treating non-eosinophilic asthma.(23) It is interesting to note that mycoplasma is also a factor in psoriasis.
Just an FYI, if this bacteria is colonizing your lungs, it is not contagious. This same bacteria also causes walking pneumonia. If you have walking pneumonia and you are not on a course of antibiotics, then you are contagious. If your immune system is strong or if it is weak but you treat this infection properly, you should be able to avoid a long term colonization.
I am sharing this information because I have spent years trying to find answers about my chronic severe unresponsive asthma. I have been to doctor after doctor, taken medicine after medicine, visited well respected hospitals, and had test after test. I am recovering from walking pneumonia (mycoplasma pneumoniae), again, and this time knowing what might happen if I am not pro-active, I am on a high dose of Biaxin and seeing improvement.
I believe that if you have a chronic disease, mycoplasma colonization is likely a culprit or co-factor. I believe more extensive research would reveal that mycobacteria are a critical factor in a majority of chronic medical conditions and illnesses. I am not sure why more medical research is not focused on mycoplasma. I think they are the missing link. I believe that developing a viable method to eradicate this bacteria would be a key factor in curing illnesses, instead of treating the symptoms of disease.
You will likely meet skepticism and resistance from doctors. Persevere, my dear. Find a doctor who listens to you. Keep testing to be sure you've eradicated this bacteria. Know that if you've been colonized, you are likely to have repeat episodes, and it may take time and considerable effort to combat it. You're not crazy and you're not alone. There is simply not enough impetus for the drug companies to research pathways to treat this form of asthma, and that's the literal bottom line. I believe that when pharmaceutical research and development is driven by profit, finding cures for chronic conditions is less of a focus than finding ways to treat symptoms. That's my opinion, for what it's worth.
Stay diligent and stay healthy.
(On a tangential note, and I am NOT promoting these conspiracy theories as truth, there are some researchers who believe that the government working with pharmaceutical companies created weaponized/crystallized strains of mycobacteria and tested them on various populations. They point to the recent emergence and prevalence of diseases like Gulf War Syndrome, Epstein-Barr, Fibromyalgia, Chronic Fatigue, Lyme's Disease, HPV, Autism, and AIDS as evidence that these strains were introduced into populations and resulted in the emergence and proliferation of these chronic diseases. They also point to a high prevalence of a 90% antibiotic resistant strain of mycloplasma pneumoniae in Asia as evidence of weaponize biological warfare. They believe this is why these diseases are difficult to diagnose and to treat. It's interesting to ponder at least.)