From Marilyn--



Dear family and friends,



Molly has been gaining strength physically, thanks to extensive supplements, in part making up the deficits in vitamins, minerals, etc. caused by the Lyme disease itself. She has been greatly helped in this by applied kinesiologist Dr. Tom Rogowskey, who pays weekly housecalls. His muscle-tests with her help determine the correct supplementation.



At the same time, neurological aspects of the disease have worsened: stinging of the skin all over, some dysregulation of thinking and mood, but most especially extreme hyperacusis (severe sensitivity to stimulation, especially sound). Dr. Susser, our Lyme expert with 40 years experience, located in Scottsdale, says that Molly's is is the worst case of hyperacusis he and his expert colleagues who specialize in hyperacusis have ever heard of. It has increased her isolation from friends; now even a few minutes of interaction can cause severe head pain for hours or even days. This (not to mention limitations on occupying herself) has affected her morale. Dr. Susser believes that the neurological symptoms now constitute an organic brain syndrome, probably the result of demylinization–-the loss of nerve insulation. He firmly believes the symptoms can be reversed, however, with the help of new, experimental, unconventional treatments.


Addressing the disease itself–destroying the dastardly and wily spirochetes (bacteria) in all their four guises/disguises–has become a pressing need and is a key part of addressing the neurological problems. Now that she is somewhat physically prepared, we have begun to try a variety of approaches in order to keep the bacteria off-balance, including antibiotics, herbs and a current version of the Rife machine.

 Besides herbs, she just recently she undertook her first antibiotics, two in tandem, to address all 4 forms of spiros at once. As expected, it was something of a drama, as the expiring spiros released new toxins causing a worsening of her usual symptoms and significant emotional upheaval. The body had to bind and get rid of the new toxins. There’s no way around this die-off reaction–called the Jarisch-Herxheimer reaction or herx for short--though it can be softened with certain supplements.

Another part of the treatment equation involves breaking down the "biofilm," which is a kind of plaque-like material in which the spirochetes shield themselves and attack the nervous system. At the same time the nerve sheaths need help to reconstitute (re-myelinize) themselves. This is all new research territory.

At this crucial stage on the long road of healing–when Molly has now been house-bound for a whole year!-- I know she would be deeply appreciative of your renewed prayers, chanting, meditation or "sits" with her, as well as e-mails and photos. 



Marilyn