This is a follow up on the 20 year old female who saw me in late march. She has been sick for over 14 months. She presented with a bulls eye rash and was treated with Doxy for 4 weeks. Headaches, shaking chills, joint paints and nausea and vomiting. She was told it wasn't Lyme. She managed to convince doctors to prescribe two more courses of Doxy, each prescribed for only 2 weeks with minimal improvements. She limped along for the next 9 months before seeing me. Her presenting complaints included: neck pain with swollen glands, headaches, joint pains, fevers, cognitive dysfunction and severe fatigue. She had become very forgetful and developed a stutter. The pain in her knees, shoulders, hips and neck was severe. She complained of sweats, blotchy rashes, sleep problems, irritability and depression. Her physical exam showed no rash but a grossly abnormal neurological exam. Findings included: upper motor neuron signs, lower motor neuron signs and evidence of a sensory peripheral neuropathy.
Following my usual rule: Lyme first. I prescribed Omnicef, Benemid and Minocin.
Within two weeks she was dramatically better. The Herx had lasted only a few days. She was free of fatigue, headaches, pains and sweats. The majority of her cognitive issues had improved. It was quite remarkable. The fly in the ointment was that she was experiencing intolerable heartburn. The Minocin I thought. I continued the Omnicef, superchared with Benemid and substituted Zithromax for Minocin.
Today, just 2 weeks later, all the gains were gone. Focusing on her chief complaint it was clear that the neck pain and swollen glands were a prominent feature of her syndrome. She was thrilled that she had experienced one great week for the first time in a year, but it was gone as quickly as it came. Now I looked at a new finding on her upper back. There were two small 2 cm red streaks about a scapula.
OK- what's going on?
Clearly blasts of anti-Lyme therapy were not helping. She seemed to have the Bartonella like syndrome described in the playbook of many other notable LLMDS. In this case Lyme was playing only a bit part in the scenario. Her Bartonella serology was negative. A "species" Bartonella PCR would be nice as would a blood wet mount. These tests had not been obtained due to financial constraints. In my mind's eye I could see swarms of tiny gram negative bacteria coursing through her blood and organs wreaking all sorts of havoc. I can't say if these organisms are actually a form of Bartonella or a "mystery bug."
Lyme just doesn't respond that quickly to any antibiotic therapy.The same is true for Babesia and other parasitic diseases. Minocin has exhibited the ability to suppress these small gram negative bacteria in some of my patients but not eliminate them. Other recent clinical experience has shown that Zithromax, which should have activity against Bartonella species, does not work here by itself. BUT, the combination of Zithromax with Bactrim has shown success in suppressing the small gram negative bacteria.
I considered other therapy options: Rifampin and Zithromax or switching to a quinolone- either Cipro or Levaquin; but I decided to try the Bactrim and Zithromax combo.
Several other doctors had told her she did not have Lyme disease (she was Western Blot positive for Bb). Confused by my contorted explanations and our discussion of treatment options, she asked me: "Doctor,do I have Lyme disease?" "Yes." I replied- "you definitely have Lyme disease, I just don't think that Lyme is causing your symptoms right now." "Thank goodness," she responded- "I was afraid I was just crazy."