Hi All,

I've had lots of ideas for my first post to this blog, and have consequently written nothing! I will be starting my first quasi-Rife treatment tomorrow (hopefully) and will probably be out of commission for awhile, so I figured I better get something started.

I'll start with something simple; an explanation of the title of the blog. Both a Maple tree and the image of a warrior have become strong healing images for me of late.

When I was a child we had a house in the foothills of the Catskills with a beautiful Maple tree in front. I loved it, and I felt it loved me--unconditionally! I also remember a feeling associated with it of strength through the trunk reaching into the earth and upward to the sky. While this tree is no longer physically in my life, I feel it still, its strength now something inside my body, rather than beside it.

The second image, that of a warrior, depicted here by my mother, is a startling one to me. I confess that almost without knowing it I had infused the challenge of dealing with my health issues with New Age notions such as "make love not war" with the microbial intruders. They must have a lesson for me, for my benefit. Or perhaps God does. Or, if only I could dwell in divine love more perfectly, I would be healed without even the need for medical treatment. I imagine I'm doing some misrepresenting, but these kinds of ideas are common here in Santa Fe, where beliefs about illness and healing crowd every street corner. (And this is only a tiny sampling.) But as something in me has grown stronger, for reasons I may grope at describing in another entry, an energy has grown in my solar plexus that can only be described as that of a warrior. I am "battle-ready".

I have felt conflicted about this! And yet it is so undeniable as to defy argument.

Here's what my dear friend Kathleen, who typed this out for me, had to say re my dilemma: "I think warrior mode is great and we should be out to absolutely get every damn little spirochete we can get our hands on. This is a very spiritual stance."

Here's what Jeannie, another friend and a spiritual teacher said: Warrior is great. Warrior FOR life, for living, for yes!!! Yay! Fierceness of warrior for life is great. If someone was in my house to harm S, it would be love with teeth not love with tea and cookies. It would be, f**k no, a firm, clear refusal to allow harm, but it would not be hey, you're a f***ker. It would be, very clear, there's the door, get out, and bless you on your way. So how does fierceness enter without making anything wrong or bad? Can you say to the spirochetes, thank God for me, and I'm saying, enough, I want to live, I fiercely show you the door.

Roarrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!

Some of you know mountain lions have a special significance for me, since I encountered one and had a ferocious face-off in the wilderness. That’s a story for another day, but it’s a happy coincidence that Jeannie sent me this image.

So perhaps it’s not such a rigid dichotomy as “make love or make war,” but “make love via war,” or “make war with love,” or something more subtle.

Finally, my father has copiously and charmingly indulged another related image, that of a dragon. Here is an example; this one he drew while I was on my first harrowing trial of antibiotics a couple of weeks ago:












It’s been rare and outrageous -- though head-splitting -- fun doing this small creative project of getting this blog going. Perhaps the big new monitor Pop is getting me will help in the future! Please see Mom's post below for more up-to-date medical info. Much love, Molly

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

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