This 35 year old female went to the local ER in October 2008. She had a rash, fever to 101 f, and chills. She was sent home without treatment. I saw her in the office a few days later. She had a very large and very red inflammed EM rash on her right chest wall. I decided to be aggressive. I double covered with Amoxil one gram twice daily and Doxy 100mg twice daily for 30 days.
I saw her 4 weeks later; everything had resolved. In June 2009 she complained of new onset fatigue--severe, disabling for several months, brain fog and word retrieval difficulties. Lab testing was then performed. A CD57 count was 28. A standard Lyme Western Blot showed 41 bands. The Babesia WA 1 aby reacted 1:256, the lowest positive titer. A Clongen WB showed multiple bands, including IgM 23 and 41. A wet mount was performed. This showed numerous small round bacteria--presumptive of a Bartonella species and "numerous large elongated extracellular motile organisms(look like a protozoan or tiny round worm)." Contemporaneously, she developed pelvic pain. She was treated with: Amoxicillin, Zithromax, Rifampin and Tindamax. This was followed by a course of Levaquin. She improved nearly 100% within 7 months-- except for pelvic pain. At her request, a repeat wet mount was performed. This time scarce, elongated, curved, extracellular organisms were seen. The Bartonella like organisms were gone. Quite a change! I empirically prescribed a course of Levaquin and Tindamax. Her gyn and GI have been unable to diagnose the source of the pelvic pain.
A second patient, a 40 something neuroscientist, has been treated for Lyme with cognitive dysfunction for 6 months. Physical symptoms have improved, but cognitive difficulties remain.
She is unable to focus, concentrate or process. Her short memory is very poor. I asked her to have a brain MRI and a SPECT scan done, but she told me she "forgot." I bring this patient up because of her past medical history. Nine years ago she developed a bone infection- osteomyelitis, in an ankle following surgical repair of a fracture. She was treated with two courses of IV antibiotics, 9 weeks each. In addition, she was treated with extensive courses of oral antibiotics. All told, she took antibiotics for 4 consecutive YEARS. She finally improved after hardware was removed from her ankle. A consultant from the infectious disease department at Johns Hopkins University, where she was treated stated that she might require life-time antibiotic therapy.
A third patient, a 50 year old woman, with a history of ulcerative colitis developed acute Lyme disease in 2007. All 13 Western Blot Bands were present. She also has had a persistent, marked elevated ANA level. She saw me after failing standard treatment (3 weeks of doxycyline). She continued to have joint pain and fatigue. She improved over a couple of months and therapy was discontinued. She had recurrent symptoms over the next year: mostly joint pain. Further courses of antibiotics (short term) were prescribed with improvements. When I saw her in late 2008 she was well. Soon thereafter she experienced a recurrence of ulcerative colitis-- after a 10 year remission. This episode was controlled with steroids and maintenance Cloazol . At the end of 2009 she suffered a severe, uncontrolled relapse of her colitis. She was treated with: Remicaide, high doses of Colazol, 6-MP and steroids. The Remicaide, given at Johns Hopkins, was not effective. The Hopkins' GI recommeded a total colectomy (resection of colon) for non-responsive disease. Not done. Her local GI got the disease under control with high dose, tapered steroids. She remembered something I once told her. She recently sent colon biopsy fragment to Clongen. The PCR test of the biopsy specimen was POSITIVE FOR LYME. Be careful what you wish for! Flagyl has given her diarrhea in the past. I cautiously prescribed a course of Cipro--today. I spoke with Dr. Kilani. "We don't know what these results mean. The presence of DNA in the biopsy material does not tell us if viable organisms are present." The suffers with autoimmune disease. Did Lyme trigger her colitis or did the immunologial effects of treating Lyme trigger the disease. She will see her GI next week. I am sure he will have fun trying to make sense of the results.
I am really not trying to pick on Hopkins. It remains one of the best tertiary medical centers in the country--in most matters.