Dr. Sam Shor, MD, FACP is an internist in Reston, VA had a practice with a focus on the treatment of Chronic Fatigue Syndrome (CFS). His journey later introduced him to the significant overlap between CFS and chronic Lyme disease and he began to think outside the box, way outside the box in the eyes of many.
Dr. Shor realize that he was likely dealing with a phenomenon that was "minimally similar to if not actually responsible for“ what he had been characterizing as Chronic Fatigue Syndrome. He further believed that the difficulty in testing for, and making a diagnosis of, Lyme disease perpetuated the problem of characterizing CFS.
One of Dr. Shor's patients was a 42 year-old lawyer that had carried the diagnosis of CFS and was on disability and out of work for over two years. The patient was intent on going back to work but had fatigue, cognitive impairment, and difficulty sleeping along with many other symptoms. He fulfilled the international case definition of CFS but after exploring his case with newfound insight, Dr. Shor felt that he actually had Lyme disease.
Dr. Shor put together an ILADS-approved protocol and started treatment. Recognizing that treatment is a process that takes time, over the next 12-15 months, the patient improved so much that he is today back at work full-time. Dr. Shor notes that the process was a gradual one and that those patients with chronic Lyme disease generally do not improve overnight. Using the questionnaire that Dr. Shor had created, clear evidence of patient improvement was seen every 4-8 weeks at his regular visits and overall sense of well-being improved. Today, the patient is off all antibiotics and continues to work full-time with an herbal protocol.
A second patient was a 16 year-old high school student that had been home-schooled because she could no longer tolerate the normal rigors of a student schedule. Initially, she was diagnosed with CFS and Fibromyalgia, but she also fit the paradigm for chronic Lyme disease. Dr. Shor started treating the patient with antibiotics and within three months, she was back to school full-time. In fact, she felt so well that she stopped the antibiotics but she quickly got worse and her symptoms score significantly raised. She was put back on antimicrobials and within three months, she was again back to a state of good health.
The experiences that Dr. Shor was having with his own patients were supportive evidence that what he was doing and what was being recommended by ILADS was in fact "valid and appropriate". Dr. Shor recognized, however, that publishing case reports would not be enough to convince the larger medical community of his findings. He knew that there had to be a more randomized, controlled approach to studying the matter further.
Questions and answers.
What percentage of the previously diagnosed CFS patients that you see may actually be dealing with chronic Lyme disease?
Confidently, 50% or more of my CFS patients may have Lyme disease as the underlying cause of their illness.
What is your preferred treatment for Borrelia?
In my study, I am using Omnicef and Biaxin. This was a combination that Dan Cameron, MD had used in a paper to show statistically significant improvement in chronic Lyme disease. I find this combination to be high on my list, though it depends on a number of different issues. I consider whether or not a particular co-infection may need to be addressed. For example, if the patient has Ehrlichia, then I lean more towards Doxycycline.
Which co-infection would you say causes your patients most severe symptoms?
Either Babesia or Bartonella. Both can be very profound. Profound neuropathic pain is identified with Bartonella. Profound fatigue, profuse sweating, and headaches are indications of Babesia. In terms of difficulty in treating, Bartonella is more difficult. Babesia usually responds to treatment with a macrolide, Mepron, and artemisinin. It may require high doses and require treatment for protracted periods of times. Babesia is easier to track as the majority of people have some sweating and this is an easy symptom to track in patients and adjust treatment. Following Bartonella is more difficult.
The above are extracts from :-
From IDSA to ILADS: A Journey Toward Reconciliation
by Scott Forsgren