From Molly (from initial newsletter)--

I am enormously grateful for all the love and support I have received in a great variety of forms. I have neighbors who have organized themselves on several occasions to do my yard work, a contractor friend who has devoted himself to solving issues in my home and even convincing friends to donate labor! Another friend organizes my meditation schedule. One friend has come from a great distance on two occasions to do all kinds of work on my house. Laura has devoted herself to researching my illness and keeping up a stream of compassion, and my nieces have kept up a flow of songs, anecdotes and artistic creations. I'm blessed in that my visiting nurse is a dear friend, as is my formal helper. My cook puts enormous love into her job, and all bring beautiful energy into my home! One friend made herself available by phone at night when monsoon thunderstorms were unraveling me.

Many others help in practical ways, perform research, or sometimes come over at a moment's notice for a needed hug. And I cherish all the messages of love and support I receive and am thankful to all those who meditate with me. I want also to say that Mom and Pop have been heroically devoted to looking after my complicated and substantial needs. They also provide amazing compassion and wisdom at just the right moments.

It's a strange life I have fallen into, so unexpectedly. Its challenges have certainly pushed me to grow in various ways. Often I am calm and peaceful, other times scared, sad, tired of it all and shamelessly sorry for myself!

My present life is not without its pleasures. Presently those include sitting on my deck and watching the fall insects, including a three-legged grasshopper with whom I feel a great affinity! Lying in the sun during my morning meditations, gazing out the window as night falls, reviewing wonderful memories, and looking at photos of loved ones. Thank you all again so much for your love and concern.

You can be in touch with me directly via large-print faxes, notes or email. My ability to respond is variable.

Please note that I love to receive photos!

I have a list of people who sit/meditate with me at times of their choosing wherever they are. This is profoundly helpful, both in terms of reducing the feelings of isolation and in terms of soothing body and mind. If you would like to join in, I'd be grateful! You can leave me an email about what time works for you.

Molly

From Marilyn (from initial newsletter)--

Dear friends and family,

It's been difficult to respond properly to all the lovely expressions of concern for Molly. Here at least is an e-mail newsletter that I hope will help.

As most of you know, Molly began 4 years ago having increasingly debilitating symptoms. She particularly began worsening in February. It was only in September that the tests definitely confirmed Lyme disease. (It's very tricky that way.) She had probably contracted it 20 or more years ago living in the northeast, and it had gone underground for a long time. Lyme is especially difficult to treat in chronic cases like this.

We are fortunate to have excellent doctors on board, Dr. Russ Canfield here in Santa Fe, and Dr. Murray Susser in Scottsdale (succeeding Dr. Dan Kinderlehrer, who has moved away from this area and is curtailing his practice because of his own continuing Lyme symptoms). Dr. Susser has had 40 years (!) experience with Lyme, starting in California well before the disease was named.

Molly's Lyme has recently especially attacked her central nervous system, causing sensitivities to sound and talking (hyperacusis), light and touch, resulting in headaches and stress throughout the body. Additionally, she has developed chemical and environmental sensitivities. She cannot exert herself much, especially to use her arms for more than very light tasks, without triggering weakness and stress response. She doesn't use her computer very often, but she can operate the keyboard--she does a little bit with her feet!!

Other symptoms include pain and swelling in the knees and other joints ("classic" symptoms of Lyme), so she scoots around the house on a wheeled stool. She is quite house-bound, and as a consequence of these symptoms, she has few activities to engage her and little or no means of distraction! Especially because of the sound sensitivity, she needs to minimize her interactions, so she gets to feeling a little isolated, despite all the incredible support she feels and receives from loved ones!

Molly's sister Laura was here with us in September to see Molly, confer and do (ongoing) research with Frank and me. The contact with Dr. Susser came out of this research, and Laura has taken part in our two long phone conferences with him.

Frank and I and friends are helping Molly get ready for winter, since she feels the cold so much these days. She has someone with her for a period everyday. We are very fortunate to have many wonderful friends, neighbors and helpers, some of them contributing from afar.

Molly has ups and downs. Some days she feels pretty bad. She has had setbacks because of her sensitivities. Recently, for instance, we thought the nutritional IVs were working, but then after a few of those, she began having extreme reactions.

Now she is about to start on a different kind of IV, this one for hydrogen peroxide, which Dr. Susser has had a lot of success with. The idea is to start small and increase it, and then add other supplements, in order to work on the sensitivities and gently begin to chip away at the spirochetes (the Lyme bacteria, wily little bastards).

Although Molly has an excellent appetite most of the time, and she is eating a very healthy diet (tending toward alkalinity to combat the acid environment of the Lyme spirochetes), her body weight is low due to malabsorption.

She isn't ready to make the trip to see Dr. Susser in Scottsdale yet, because the trip itself will be very hard for her. But Dr. Susser (as well as Dr. Canfield) recognizes that problem and is being very helpful by phone.

Fondest wishes to you,
Marilyn