Brian Fallon, M.D., M.P.H.
Director of the Center for Neuroinflammatory Disorders and Biobehavioral Medicine
Director of the Lyme and Tick-Borne Diseases Research Center
Columbia University Medical Center
Summary from Brian Fallon's talk at the IOM: here 13 mins in
A European study showed 50% Neuro Lyme pateints had persistent symptoms after 3 years compared to 16% of EM patients
Lyme does not have the same trigger points as Fibromyalgia patients
When requesting patient criteria for chronic Lyme it is pointless asking for only those with IgG positive WB as many would not match the criteria
Need more studies outside the use of antibiotics to track improvements (ie a whole management look at Lyme in line with other conditions)
Talks about doctors calling patients with symptoms after 4 weeks treatment as having a somatic disorder - says this can be down to lack of knowledge, the belief that 2-4 weeks is sufficient, lack of recognition of the chronic form of disease or just plain hostility towards the patient
Talked about various studies that showed that fatigue & pain was helped by IV treatment. Criticised a study (Krupps) that claimed that cognitive function was not improved when people were recruited for fatigue & not cognitive related issues, so he reasoned that if the subjects had little cognitive problems to start with then there's no surprise if they didn't improve anymore than the control group
What do we know about non antibiotic treatment therapies? We know nothing there has not been one study and that is absurd these patients are suffering so much and we don’t have a single study except for a few antimicrobial but nothing outside of the realm of antibiotics.
Why are there persistent symptoms?
it could be
reinfection from a further tick bite
re activation of latent dormant infection
Physiologically active but post infectious spirochetes
Widely distributed effects post infectious phenomena
Neuro transmitter changes
Why might it be labeled as a somatic illness, because of the limitations of the physician believing that two to four weeks of antibiotics is always curative. Assuming any symptoms after antibiotic treatment are due to other causes.
Or a lack of recognition that post infectious symptoms can go on for years where you can have chronic fatigue cognitive symptoms and pain
Or could be that there is hostility to chronic illness because some physicians can’t deal with that.
He believes that the NIH to set up a specific sub-committee solely to look at chronic Lyme infection...