Update on Molly, July

Dear family and friends,

I wish I had better news to report. Molly is having a very difficult time, because of deterioration in her physical vigor and increase in her neurological symptoms, especially sensitivities of all kinds. It is very tricky treating Lyme disease, although she is able to take many supplements meant to counteract various aspects of her troubles, as well as attacking the spirochetes themselves.

A principal obstacle to improvement is her sensory sensitivities not only to sound, but to light and motion. Most recently she is suffering from vertigo. Sound sensitivity (hyperacusis) is said to be suffered by almost half of Lyme victims to greater or lesser degree, but information about treatment is very difficult to find. It makes the herxes (symptoms resulting from the toxins released by the dying spirochetes) terrible to deal with, even though they are “only” intensifications of her usual symptoms. A related symptom is panic attacks that awaken her out of the blue and make rest difficult. What an awful disease Lyme is– you have to decide how much torment you can stand at a given time in order to treat it.

The delightful early summer evening drives we were having near Santa Fe, as described in Molly’s and my entries above, have been curtailed because of a mistake one day in going out while the sun, though low, was still bright as only sun in New Mexico can be :-). This set Molly back in her tolerance for not only light but sound and motion as well. Now she is confined to a darkened room, except for evening sits on our portal watching the sky. We fantasize that we are the deck of an ocean liner.

We hope to report on new developments in her treatments before long.

One result of Molly’s being at our house is that she doesn’t have access to a computer, since ours are on the second floor. She is also having more trouble writing--even for me to transcribe into e-mails--so she asks me to give her regrets for not being able to communicate with family and friends as much as she would like to. But please keep the blog comments and e-mails coming! You can post comments to the blog following the instructions in the right column. Or just use my e-mail address (on my e-mail notification about the new posts) since Molly isn’t able to pick up her own e-mail, and say whether or not you want your message posted.

Love from Marilyn and Frank


Molly says:
I do wish to add that I have not been receiving e-mail since mid-June. So, I’m not ignoring you, if you wrote! I was in the middle of so many delicious email conversations that I miss terribly–some loving, supportive, disclosing and honest, some deep and existential, others deliciously newsy and light, some hilariously offbeat, some more intermittent but heartful and connected. Facebook was a wonderful discovery as a way to connect with people as well. I miss you all!