Here is a male patient in his mid 40s. He has been a regular patient in my Family Practice office since 2001. He was initially seen for depression, anxiety, panic disorder and obesity. In April 2002 he presented with a paralysis of the left diaphram. This was associated with a great deal of shortness of breath. He was seen by pulmonary specialists and neurologists who confirmed the diagnosis but were unable to offer a cause or treatment. At that time I was not a LLMD. At that time I elicited a history of tick bite with rash in 2000. I started him on Docycyline 100mg twice daily. I noted other symptoms of headache, fatigue and joint pains. The paralyzed diaphram was due to dysfunction of the phrenic nerve. I ordered standard Lyme serology which consisted of an ELISA with a reflex WB. The test was negative. I referred him to an ID specialist who felt he did not have Lyme disease. In May 2002, after a month of Doxy he noted that his anxiety was better but that his depression was worse. He continued to have shortness of breath and also complained of some numbness in his hands at night. After 30 days the Doxy was stopped and he was referred to a psychiatrist. He was on numerous psychotropic drugs for depression and anxiety. He also was seen by a rheumatologist. He was diagnosed with fibromyalgia which was treated with Neurontin. I saw the patient in October 2oo7. My note indicated Lyme disease?
Again, I was not Lyme literate and I followed the recommendations of the "experts" of whom he had seen many. Moving ahead, in early 2003 he saw an ILADS, LLMD rheumatologists based on self referral. This physician wrote a detailed note which suggested a chronic infectious cause of his ongoing issues. She found biliary dyskinesia and recommended cholecytectomy before beginning long term antibiotics. I was not Lyme literate but found the detailed consultation "interesting." Salmonella was found in his stool and this was reported to be a contributing factor. Because of fatigue I recommended a sleep study. He had no gallbladder symptoms so the organ was not removed. By November 2003 the sleep study confirmed severe sleep apnea and C-PAP was initiated, but not until May 2004. He was seen frequently in our office was a multitude of multisystem complaints. The primary issues continued to be severe depression and anxiety.
In 2005 he reported seeing worms in his stool. An ova and parasite stool exam was negative. He was treated empirically with Flagyl and then Abendazole with resolution of this complaint. The C-PAP significally improved his fatigue but not his shortness of breath. He continued treatment for depression and fibromyalgia without much relief. He was a "frequent flyer" in my office. In January 2006 he reported a brief episode of left facial drooping which occurred in FLA while visiting his father. He was evaluated for a possible TIA; the work up was negative. By February 2007 I was in the early stage of Lyme literacy. At that time I combined symptoms into a complex. He had a history of tick bite with ECM. He had joint pains and fibromyalgia. He had an episode of facial droop (Bell's palsy?) and he had multiple psychiatric symptoms including memory loss. Lab studies at that time showed: Negative Lyme WBs, a Lyme C6 peptide aby index of 0.31, folic acid of 4.8, B12 of 313, vit D OH 25 of less than 7 and a CD57 count of 66. Screening for co-infections by Quest was negative. He was started on Ceftin and Biaxin. In March 2007 Plaquenil was added. Within a month he reported some cognitive improvements. Antibiotics were continued for several additional months. In June 2007 his C6 index had increased to .73. I felt that this was evidence of "seroconversion" of Lyme. Various antibiotic combinations were continued. These included Flagyl, Rifampin, quinolones and others. He complained of increased joint pain and ongoing fatigue and depression which did not improve. In March 2008 he reported stopping antibiotics with a prompt increase in cognitive deficits as well as joint and muscle pain. Antibiotics were restarted but were no longer as effective. Dizziness, Brain fog, joint pain, mood swings and fatigue continued. He developed new symptoms including a loss of bladder control. He became very discouraged. Supportive therapy with Welchol and Wobenzym-N were not helpful. In July 2008 and Igenex serology for Lyme was obtained. His IgM bands were positive only at the 58 and 66 positions. His IgG bands showed 41+++, 31,39,93 Ind. Shortness of breath due to the paralyzed diaphragm remained a significant symptom. I tried Diamox to stimulate respiration. It was somewhat helpful. On September 4, 2008 I reviewed his long record and realized he had never been tried on empiric anti-Babesia therapy. Month after month I had seen this patient for chronic Lyme disease. He had bouts of improvement followed by set backs. He barely functioned and had considered full disability and even suicide at times. I said lets treat Babesia to see if this helps. He was started on Mepron, Biaxin and Artemesia. When I saw him on October 2, 2008 I was expecting the usual. Still feeling lousy.
Instead I was greeted with: " No doc, its good news this time." He had Herxed terribly for about 5 days. He had considered stopping therapy. But then something miraculous occur ed. He felt great. It was the best he had felt in years! His fatigue was better. He had new found energy. His shortness of breath was better. His brain fog was lifting. His anxiety and depression were better.
Neck pain, which I had not focused on, was better. It was dramatic. After 18 months of treatment (not always consistent) he was better and optimistic. Why had I been holding out and not prescribing this miraculous treatment? This is a question I have to ask myself. Did he respond to anti-Babesia therapy because the Lyme had been thoroughly trounced? Or did I let this one slip through. I am still learning. I won't make this mistake again.
There is a notion amongst ILADS docs that 58 and 66 bands suggest Babesia. I have become suspicious that low folate and B12 suggest chronic RBC infection. Babesia is the most likely culprit. Ehrlicia and Bartonella probably don't persist that long if standard Bb therapy is used.
He is not the only Lyme patient I have seen with a paralyzed diaphram.
I have to be on the lookout. It is not just new patients who have Lyme. It is also old patients who have been in the practice for years with "mystery" illnesses.