I must be absolutely clear: this is not medical advice. I am not advocating for anyone to do what I did or to believe that my experiences are ultimately true and therefore applicable to everyone. This is only a reflection on what I have personally experienced. If others can learn from my mistakes in order to benefit themselves, then that's great. But as I mention in many places on this website, every person's health is very different, and what may be useful for me may not be useful for someone else.
But a couple years ago I had my first lung collapse, likely from severe inflammation stemming from chronic, uncontrolled infection in my left upper lung. I had a pleuradesis operation, but a few months later I had a smaller collapse again in the same spot. It became clear to me that I was now at a stage in my disease where the lung damage I was experiencing was accumulating and becoming irreversible, and that I must do everything in my power to preserve the lung capacity that I have left. It caused me to rethink my approach to treating my lung infections. I was beginning to understand that I needed to be more aggressive in my antimicrobial regimen, and that waiting for excessively long periods of time between antibiotics may be doing more harm than good.
A Change in Tactics
Starting last summer, I began to negotiate a little more with my doctors, who had introduced to me the idea of coming in every 3-4 months for a hospitalization regardless of my lung exacerbation status. Previously, I had resisted this idea as causing overexposure to antibiotics that could disrupt my gut microbiome and make me more susceptible to infections by weakening my immune system, and potentially leading to the development of allergies or fungal overgrowth in the lungs, like Aspergillis. Although these concerns are still forefront in my mind, I now have a better understanding of how to control for them while still using antibiotics strategically and effectively.
I realized that in the years of religious avoidance of antibiotics, there were no significant developments in the two major fears I had (developing antibiotic resistance and degrading my gut microbiome), at least not in a way that was directly attributable to my use of antibiotics. My digestion had improved significantly during that period, but that could also be attributed to many things including a major shift in my diet, better exercise, and the regular use of digestive herbs, prebiotics, and probiotics. There were no major changes to my sputum cultures during that time other than a slight improvement in antibiotic sensitivites, but those also could have been due to the use of herbs that inhibit bacterial resistance to antibiotics (like thyme, goldenseal, or rosemary). So while there were some fairly clear drawbacks to my avoidance of antibiotics in terms of lengthy periods of uncontrolled infection and permanent lung damage (I lost about 5% of lung function during that time), there were not significant benefits, at least none that I could measure. I did, however, learn a lot and in experimenting with antibiotic alternatives I discovered many things that have helped other people in very real ways.
So now I have developed a new routine of antibiotic use, one that rotates antibiotics to minimize developing resistance, but never going for lengthy periods without having some type of antibiotic on board. This is tailored specifically to my colonizing bacteria and my symptoms. Throughout the years I have gotten to know my bugs very well and their patterns are very predictable. My major bug is MRSA, and if I go too long without antibiotics (more than 2-3 weeks) I get fevers, fatigue, and excessive mucus production. So my new regimen goes like this: I do 4-5 days in the hospital with ceftazidime (covering Pseudomonas) and vancomycin (covering MRSA), then continue for 10 more days of IVs at home. After finishing this course of IVs I usually have about 3-4 weeks with no fevers (this period has lengthened since improving my adrenal resilience with adaptogenic herbs, using testosterone, and supplementing with my herbal antimicrobial tincture formula - osha, thyme, usnea, elecampane - as needed). Then I start a month of inhaled vancomycin, and for the last 2 weeks of that month I use oral minocycline (because I usually start to develop a fever at that point). Then I wait another two weeks (usually using my antimicrobial lung tincture) and then go on two weeks of Sivextro (tedizolid). Sivextro is a newer cousin to Zyvox (linezolid). Zyvox is a very effective anti-MRSA drug with very intense and very serious side effects that I cannot tolerate, but Sivextro is as effective but has far fewer side effects (none for me), although it is extremely expensive. Luckily I have great health insurance (Medicare + Medicaid) that covers it with minimal whining. Then I wait another two weeks until I develop a fever, and start the whole cycle over again. So I end up going into the hospital about every three months.
Since starting this regimen I have more energy and feel sick and fatigued much less often, which allows me to exercise more, improving my airway clearance and overall strength, as well as my quality of life. I think that's a big point I want to make: my new routine improves my quality of life so that I am happier and more active, which improves my overall health. I am still very focused on maintaining a strong and diverse microbiome, so I supplement daily, always, with probiotics and eat a diet high in prebiotic plant fibers.
Things to Note
I must admit though that there is a big variable in here that has contributed to the overall improvement in my health in addition to this new antibiotic routine: supplementing with testosterone. Since I am a transgendered person identifying as trans-masculine, I have been supplementing with testosterone for about a year and a half. Alongside top surgery, it has radically improved my life in more ways than I can express. This has to do both with finally getting the treatment that I've needed for my whole life, improving my mental state and reducing my dysphoria, giving me much more energy, and also helping to remediate the negative effects that estrogen has on cystic fibrosis (I've written a really dense scientific paper on estrogen's role in CF if anyone is interested). I could write a separate article on this if anyone is interested.
You will also notice that I do not inhale any anti-Pseudomonal antibiotics. This is because I noticed that for me personally, they have no effect on either my symptoms or my sputum cultures. Furthermore, I recently listened to an excellent lecture by Dr. Richard Moss from Stanford, put on by CFRI, on the growing problem of Aspergillus colonization and Aspergillosis in CFers. One of the major causes of increased Aspergillus colonization in CF lungs is the constant use of inhaled antibiotics, specifically anti-Pseudomonals like Tobi/tobramycin and Cayston. Using these inhaled antibiotics with no breaks makes overgrowth of fungus in the lungs more likely because it disrupts the lung microbiome; remember that antibiotics are antibacterial but not antifungal. If inhaled anti-Pseudomonal drugs are effective for you, that's excellent. But I worry about constant use for the above reason. That also goes for constant use of antibiotics of any sort - oral or IV. Thus, I think taking breaks in between antibiotic courses and also including regular use of antifungal herbs are good ideas in these situations. Some essential oils are antifungal (such as thyme, lemongrass, or tea tree oil) and can be used in a diffusor, steamed, or nebulized in certain situations. Other herbs can be taken in tincture or tea form like thyme, osha, goldenseal, calendula, and many others.
I still believe that antibiotics need to used only when absolutely necessary and with very careful planning and study of all potential repercussions. Americans (and most people with access to Western medicine) use antibiotics too frequently and often inappropriately. There are many consequences to the overuse of antibiotics that I have outlined elsewhere in this website including disturbance of the gut microbiome, digestive diseases, allergies, autoimmunity, antibiotic resistance, reduced immunity, and increased risk of fungal infections. However, they are literally lifesaving when properly used, and in CF we need them in many situations. So my views have changed in this regard - I believe that I use them more intelligently now. And it's also possible that my tactics may change again with updated information - that's what a good scientist does! I still use herbal remedies in a complementary way with antibiotics in order to control my infections better. I know for sure that using antibiotics has saved my life many times and their continued use will lengthen my life by decades. But they will only continue to help me if I use them judiciously and in conjunction with other therapies.