On Antibiotics
Summary
I have been taking oral antibiotics for ten years, since this infection began. They are the only drugs that quell my symptoms, but they do not resolve the problem. The antibiotics subdue my facial pain, but when I come off them, my symptoms return within a few days. I have tried most of the macrolide antibiotics; Azithromycin, Erythromycin and Clarithromycin. The antibiotics that have been on repeat since 2015 are Doxycycline, 100mg, Clarithromycin, 500mg, Metronidazole, 400mg, Azithromycin,500mg. Cephalexin is prescribed intermittently, which is the most effective one that I take. I do not take any of these antibiotics at the same time. They are prescribed cyclically. The ongoing antibiotics have done no harm to my liver or kidney function, which are both checked regularly
The most therapeutic antibiotics are Doxycycline 100mg and Cephalexin, 500mg but the antibiotic that has been the most effective, by far, is oral Linezolid, 600mg. I have been prescribed it twice, for one week in 2013 and for one week in 2022. Linezolid is an Oxazolidinone antibacterial, and it is active against Gram-positive bacteria, including Meticillin-resistant Staphylococcus aureus (MRSA.) It is normally prescribed for complicated skin and soft-tissue infections, because it penetrates muscle and soft-tissue, in a way other antibiotics don’t. It is an incredible antibiotic for soft tissue infections (SSTI’s.) I have been symptom free for the one week duration, when I have taken Linezolid, but my symptoms returned when I came of it.
My Request For Intravenous Antibiotics
I have been unable to speak with a microbiologist to ask why these antibiotics only work partially. In addition, I have been unable to find out why a stronger antibiotic cannot be tried intravenously. I would love to meet a microbiologist, who could tell me why these antibiotics they quell my symptoms, when I am on them, but do not resolve the problem. I can never get past one appointment with an Infectious Diseases Physician. Questions about Vancomycin, Daptomycin, and longer-term Linezolid, are ones that I have wanted to raise, but no clinician will engage with me. I have asked for an admission to try Intravenous Antibiotics, but my request has been refused. It is difficult for me to understand why a request for an admission to try intravenous antibiotics is an unreasonable request, after suffering this long with a potential chronic infection?
Raised Neutrophils?
I have seen four Infectious Disease Consultants. They have all discharged me after one appointment, with no diagnosis or treatment plan offered. One Infectious Diseases clinician refused to see me, and sent the referral back to the GP, with no explanation as to why she would not see me. One of the hardest things for me, has been that all of these clinicians have ignored abnormal raises with my bloods over the ten years. These abnormal raises have mainly been with my neutrophils, white blood count and Mean Corpuscular Hemoglobin Concentration, (MCHC.) These are all signs of an infection being present. It is therefore difficult when these results are overlooked because they are providing valuable information about the potential cause of my condition. These blood tests are available to view in my download section.
Clinicians do not answer my questions about what the raises in my neutrophil count mean and why these antibiotics quell my symptoms, but do not cure the problem. Many of them have put forward a futile argument that the reason that I respond to the oral antibiotics is because they contain an anti-inflammatory agent.
I take anti-inflammatory tablets intermittently for Achilles tendonitis. The medications that I take are: Naproxen, 500mg, Meloxicam and Ibuprofen 600mg. These all work for my heel pain, but they have no therapeutic effect on my facial pain. If it was the anti-inflammatory agent in the antibiotics that I was responding to, then anti-inflammatory medication would subdue my facial pain. It doesn’t. I have also tried oral Prednisone, but that made my facial pain worse.
Not Placebo Effect
One Infectious Diseases Consultant, who had only met me once, and who did no diagnostic tests, told me that the antibiotics that I take are a ‘Placebo Effect.’ He said that ‘I imagine that the antibiotics are helping’- that they are dummy treatment. I do not imagine anything. If I do not take the antibiotics, my infection markers go up. My facial pain also becomes unbearable, and I become systemically unwell. I believe that the antibiotics that I take help because there is an infection that the antibiotics are responding to. It is a great shame that the first surgeon, who removed my superficial lobe, did not culture my parotid tissue. They may have found the bacteria in that tissue sample. Reactive lymph nodes were also found in that tissue, which are normally a sign that the body is fighting an infection, but again, these valuable clues have been overlooked.
What is a reactive lymph node? (medicalnewstoday.com)
The most recent Infectious Disease Consultant, who I saw, told me that Intravenous (IV) antibiotics cannot be administered when we do not know what the bacteria is causing the potential infection. He said that until the rest of my parotid gland tissue is removed and cultured, IV antibiotics cannot be administered.
There is no Head and Neck surgeon, who will remove my remaining parotid gland. I therefore struggle to comprehend why empirical IV antibiotic treatment is not worth a try. If this is a soft tissue infection, then an intervention is needed to prevent any further damage to my soft-tissue.
If anyone knows of an Infectious Diseases physician, with an interest in complex soft-tissue infections, (SSTI’S) and who may be able to help me, please get in touch.
Recommended Articles
Which Antibiotics Are Best For Skin and Soft Tissue Infections?
Practice Guidelines For The Management Of Soft Tissue Infections
Bacterial Skin and Soft Tissue Infections in Adults
Antibiotic Drugs For Treating Skin and Soft Tissue Infections.
Useful Links
Medication Template;2015-Present 1
Medication Template;2015-to Present 2