The diagnosis and treatment of anaerobic bacterial infections seems to be off the radar screens of all doctors except research medical doctors, who aren’t licensed to treat patients.
Of the many physicians I saw about my actinomycosis, only one had any familiarity at all with the disease. The list of doctors I consulted about this infection in recent years included four infectious diseases doctors, two otolaryngologists, four dentists, three endodontists, four oral surgeons, three colorectal surgeons, three gastroenterologists, three gynecologists, one gynecological oncologist and five internists – all of which are believed by mainstream medicine to be able to diagnose actinomycosis. This list doesn’t include other specialists and family doctors I consulted over a lifetime of being plagued with the disease.
Medical researchers concluded that early undiagnosed occurrences of the disease go into remission with the use of short courses of antibiotics prescribed for suspected bacterial infection only to recur in later years – typically during middle-age once the body’s defenses have weakened. They found a clinical pattern of remission and exacerbation of symptoms occurring in parallel sequence with initiation and cessation of standard antibiotic therapy.
I found a clinical pattern of doctors’ increasing frustration leading to diagnoses of anxiety and prescriptions for antidepressants when patients return after the previously prescribed antibiotics failed to resolve symptoms long term. And this wasn’t just happening to me.
With no non-profits or other organization to help patients get help with anaerobic bacterial infections, I started an actinomycosis support forum on http://www.mdjunction.com in the fall of 2008. I wanted to see if there were others out there encountering the same difficulty that I was in finding competent medical care for this infection. There were — not only in the U.S, but also in England and Norway as well.
Diagnosis of a case of actinomycosis in England in 2008 made headline news because the disease was largely thought to have been eradicated from developed nations with the invention of penicillin. Dr. John Jacklin and Dr. Syed Tariq diagnosed Mrs. Christine Wicks of Long Sutton as suffering from actinomycosis — a diagnosis that eluded the numerous doctors Wicks saw over two decades. To help raise public awareness of the disease and establish a support forum for other sufferers, Google in conjunction with Queen Elizabeth Hospital in King’s Lynn, Norfolk set up an “actinomycosis group” within Google Groups.
Here we learned that within four months of stopping several months of intravenous antibiotics her husband administered in their home, Mrs. Wicks’ infection was back with a vengeance. Some felt that failing to follow the IV treatment with six to 12 months of oral antibiotics caused the infection to return. Others felt that because her infection had gone on for so long before being diagnosed, she had developed complicating factors. There was really no consensus on the issue.
Mrs. Wicks had heard reports of hyperbaric oxygen therapy being successful in eradicating anaerobic infections. So she pursued the possibility that the NHS would cover such therapy for her actinomycosis.
The requisite approval process took months and included surgical removal of a noticeable part of her neck to obtain a biopsy sample large enough to encapsulate pathogens that die immediately upon being exposed to oxygen in the air. Pathologists needed the biopsy to confirm that Wicks still had the infection and that the obvious lumps in her neck weren’t being caused by something else. Wicks said the biopsy left a hole in her neck and caused her so many problems that she wished she’d forgone trying to get approved for additional therapy. (Actinomycosis experts know that traumatic disruption of mucosa — cutting flesh — causes the infection to spread.)
Once approved, Wicks started hyperbaric oxygen treatments in the hopes that this treatment regime would help. She underwent 12 of the 40 two-hour hyperbaric oxygen therapy sessions prescribed before she was again hospitalized, this time with an e-coli kidney and urinary tract infection. The actinomycosis infection eventually spread to her lungs, which precluded her from continuing the hyperbaric oxygen treatments.
When she was diagnosed two years ago, Wicks, now 67, knew she’d never be cured. She told reporters then that it was just such a relief to finally understand what had been happening to her body the past 20 years and to have found a doctor with the patience to listen and find out what was really wrong. Like so many others with undiagnosed illnesses, Wicks endured multiple encounters with doctors who told her she was making up symptoms and needed psychiatric help.
She first visited her doctor in 1988 with persistent sore throats and ear pain. As the pain worsened and symptoms spread to other parts of her body, dozens of internists and specialists indicated everything from tonsillitis and strokes to multiple sclerosis and smoking as the cause of her health problems, even though she has never smoked.
Asked why so many doctors failed to correctly diagnose Mrs. Wicks, Dr. Syed Tariq surmised it was because anaerobic bacteria dies when it comes into contact with air or more specifically, oxygen.
Because the clinical presentation of anaerobic bacterial infection is non-specific (lacking specific symptoms upon which to pin a diagnosis), definitive diagnosis is generally based on the pathologist’s identification of actinomycotic granules from a biopsy or tissue specimen. Such biopsies are difficult to master because special precautions must be taken to prevent the pathogen from coming into contact with any oxygen. Special pre-reduced anaerobically sterilized (PRAS) transport media and non-typical stains (ie. Grocott-Gomori methenamine-silver nitrate, Brown-Brenn, McCallen-Goodpasture) must be used with specimens.
Because lab technicians do not typically use these materials, pathologists need to be notified in advance that the specimen contains anaerobic bacteria. Since exposure to an aerobic environment may compromise biopsy specimens, prompt transport of specimens (in an anaerobic transport device) to the microbiology lab is necessary for isolation of the anaerobic pathogen. Cultures, if done, can take up to two weeks to grow, which is more time than the few days labs typically allow for bacterial cultures.
The Merck Manual notes that fine needle aspiration is often used to obtain a sample of tissue deep enough to be infected with Actinomyces because surface mucosa typically carries only aerobic bacteria. It further states that computed tomography or ultrasonography are often employed to guide the needle to the infected area because it is essential that the tissue sample be representative of the infection core as peripheral tissue may not yield the bacterium.
Research indicates that not many practicing surgeons take the time or go through the inconvenience of fine needle aspiration biopsy to detect an anaerobic infection. Using this technique can often take as many as three tries or more before a successful specimen is captured.
This is why most surgeons prefer to remove entire organs (ie: hysterectomy) to obtain a proper biopsy. Or as Dr. Norman Tacktill put it,
“Typical tissue biopsy is like playing the mechanical “claw” game” in which the operator of a toy crane fishes for toys and prizes. “More often than not,” Tacktill said, “he comes up empty handed.”
As a practical matter, actinomycotic specimens are typically discovered by pathologists anecdotal to surgery performed for some other suspected condition. Consider the challenge in convincing insurance companies to pre-approve the expense for what amounts to exploratory surgery to obtain the evidence that the patient has the suspected anaerobic bacterial infection. In advanced cases of persistent actinomycosis, radiographic studies such as CT scanning and MRI are useful in detecting osseous (bone) and soft tissue involvement. But isn’t the point to try to diagnose the infection early enough for treatment to be effective?
With this many hurdles, it’s understandable why so many practicing physicians would choose to pretend anaerobic infections don’t exist or that such diagnosis is the responsibility of some other physician. In truth, the pervasive aspect of the infection makes it most doctors’ responsibility to diagnose and treat. Unfortunately, when everyone is responsible, no one is responsible. So you end up with scenarios like the following that happened to me.
I was having so much difficulty finding a practicing physician in the U.S. who knew anything about actinomycosis, that in December 2008, I wrote Nancy Davenport-Ennis, who was the chief executive officer of the National Patient Advocate Foundation (PAF). She asked one of her supervisors, Mary Giguere, to seek out a local infectious diseases doctor, who was familiar with actinomycosis. She had quite a time locating one.
When I called the offices of various specialists as a patient to inquire if a doctor had specific knowledge about diagnosing and treating actinomycosis, the administrative personnel instructed me to make an appointment. They had no way of knowing the doctors’ sub-specialties without specifically asking the doctors, which they weren’t about to do. Giguere had the slight advantage of stating that she was asking about a specialist’s typically unadvertised sub-specialty on behalf of the PAF.
Actually, I’m not sure whether Giguere’s affiliation with PAF pulled much weight or whether she was lucky enough to reach an office in which the assistant was related to a doctor and therefore was not afraid to ask if he knew anything about actinomycosis. In any case, Giguere was successful in locating a physician with at least some familiarity with the infection. For this, I shall be forever grateful because I know that non-profits shy away from recommending specific doctors to patients, and policy-wise, the PAF was no exception.
In 2009, based on the evidence I provided, Dr. Richard Sall of Infectious Diseases Specialists of Virginia LLC prescribed four months of oral Penicillin VK (500 mg) to treat my actinomycosis. Instructions were to take four tablets a day. At a follow up visit, I told him that I was experiencing terrible heartburn from taking just one to three tablets of Pen VK each day and reminded him of my history of gastrointestinal problems, which included erosive esophagitis, reflux, hiatal hernia, H. pylori infection, ulcerations and colitis.
Still believing conventional thought that treatment consisted of high doses of penicillin, I asked Dr. Sall about the potential of getting IV antibiotic therapy. I knew I needed gastrointestinal surgery and was worried that without such treatment, the actinomycosis would spread as it’s known to do with traumatic disruption of mucosa. (I found from experience and from other patients that surgeons tend to feel that infections resolve themselves after surgery or that an infectious diseases specialist is responsible for prescribing antibiotic therapy.)
The request was problematic for Dr. Sall for a couple of reasons. First, Dr. Sall wasn’t certain that around the clock home administration of IV therapy was feasible. Second, he wanted an updated pathology report showing the presence of actinomycotic granules. The pathology report I had supplied from the tonsillectomy in 2001 was now several years old.
I told him I was having a consult with colorectal surgeon, Dr. Donald Colvin of Fairfax Colon & Rectal Surgery, P.C. and could arrange for a biopsy to be done during my upcoming colonoscopy. This, too, proved to be problematic.
In a brief telephone conversation prior to our initial consult, Dr. Colvin made clear that he was not familiar with actinomycosis and recommended that I seek treatment for the infection from an infectious diseases specialist. Nonetheless, he agreed to do the biopsy.
At our initial consult on August 5, 2009, I gave Dr. Colvin the contact information for Dr. Thomas Russo, a research doctor in the Division of Infectious Diseases at the University of Buffalo School of Medicine. Dr. Russo wrote a section on actinomycosis in Mandell’s Principles and Practices of Infectious Diseases. Dr. Russo responded to my e-mail inquiry saying he would readily speak with a practicing physician about the nuances surrounding actinomycosis, but could not speak directly with me because, as a research doctor, he was not licensed to diagnose and treat patients. From what I’d read, it seemed important to know the particulars about biopsying for a specimen so sensitive to oxygen.
At the follow-up visit following my colonoscopy in September, I was surprised to learn that the pathologist found absolutely no bacteria whatsoever in my colon. Medical researchers reported finding upwards of 480 species of bacteria in the typical human colon.
I learned that multiple surface mucosal biopsies were taken, placed in formalin and sent to the lab as usual. It never dawned on me that it was not possible during a colonoscopy to obtain a tissue sample deep enough to contain anaerobic bacteria. Doing so would certainly result in colon perforation. I also hadn’t counted on the fact that the harsh colon prep would remove all flora from the surface layer of the colon from which, I learned, colonoscopy biopsies are typically obtained.
Dr. Colvin’s failure to consult an expert in the disease and frustration over my questioning the procedure is reflected in his notes of September 21, 2009 in which he concludes the patient “is still pretty convinced that she has systemic actinomycosis as the cause of all of her problems.”
There was an obvious disconnect here. I assumed the surgeon would obtain needed information and perform the anaerobic bacterial biopsy correctly. He assumed that proceeding as usual was all that was required to obtain a proper biopsy for detecting actinomycotic infection.
Once a common disorder, actinomycosis is now said to occur in 1 of 300,000 cases. Some postulate that the occurrence is much higher, but that the disease is either misdiagnosed or goes undiagnosed.