There are numerous factors which seem to determine how each patient will respond.
If patients are to improve I believe that doctors need to try different approaches. The one size fits all method works poorly. A 43 year old woman was seen several months ago for a second opinion. She was diagnosed with fibromyalgia and CFS. She had been very physically active. She was a personal trainer. Now she was a wreck. She had typical signs and symptoms of disseminated Lyme and neuroborreliosis. Her SPECT showed left frontal lobe hypo perfusion. The brain MRI was normal. Her exam had neurological abnormalities and her labs confirmed exposure to Lyme. She was treated with Ceftin and Minocin. There was a tolerance issue and a bad Herx. She was given a Medrol dose pack and switched to Biaxin and Plaquenil. After two months she felt even worse. We started IV Rocephin. The pain was improving but the cognitive issues were unaffected. Symptoms of sweating in cycles suggested Babesiosis. Mepron and Artemesin were added(the Biaxin and Plaqueil had never been discontinued). The sweating went away but otherwise she felt worse.She only took this regimen for a month. There was a worsening of cognitive functions- more memory loss, and an increase in neuropathic symptoms and pain. She was then treated with only Rocephin: still not better. IV Zithromax was added- then she started to improve. It was the IV Zithromax that was making a difference. The Rocephin was stopped and she continued to improve. When Flagyl was added she again felt worse. The treatment was changed: IV Zithromax. Just Rifampin was added and she was now really improving. She was tired- but able to work. Her cognitive dysfunction was clearing up. Much of her pain was gone. (I had prescribed Levaquin but she didn't take it after looking up its side effects). I saw her today 5 months into treatment. The hangdog look was gone. She agreed to try the Levaquin. I hope it helps.
She had Lyme with neurocognitive deficits and an abnormal SPECT scan.
The only lab data I will add is that she had a high C6 Lyme peptide index and that her blood smear at Clongen showed motile gram negative coccobacilli.
What have I been treating her for?
Do people really have Herx reactions which go on for months?
If a patient Herxes for more than one month I think it is time to change the treatment. The immunological consequences of a prolonged "Herx" can't be good.
Bacteremic. Yes. With what? Has Fry found the answer before Clongen: We shall see.
Babesia- or an immitator like Toxoplasmosis, as exists in immunosupressed HIV patients? This has been suggested as a possibility.
Is there really Bartonella and or Mycoplasm. We don't know.
Why didn't Rocephin work while Zithromax did?
There are lots of questions and still few answers.
As a clinician all I can do is report my clinical results.
Again, one size does not fit all.